Madie's World

All for the best eh?

2012-02-02T10:32:00.006-05:00

What a day yesterday!
First and Foremost I LOVE madies school..they always say they want the best for my madie and they have gone above and beyond to help get madie allllot of things to help her!
Yesterday Juuust as I was comming to pick her up after a nice morning having thai food with my mother in law and poking thru antique stores and consignment shops..
Madie went into a Giant Seizure.
Now all my seizure Peeps (yo) KNOW that big seizures SUCK! Well it was to me her typical scary seizure..stiffened. Eyes rolling. mouth wide open. jerking. stiff. gurgles...spitty...hands clawed.. Scary Shit! But I have seen it before.
Typically I let her ride it out. I hold her little self and talk to her and rub her back and her hair..let her breathing calm down and lay with her for a few minutes till she falls asleep and or comes out of the spaced out state that the seizure puts her in. AT NO point have we ever had to use Ativan to stop her seizure. I mean I know of kids who have seizures that last hours! and scare the crap out of everyone and hospital literally has to sedate the kiddo!
Madies typically from start to finish maybe about 5 minutes..after the intital terrible part passes she is usually pretty out of it..and slowly falls asleep..not very responsive.
Well yesterday at school...she was in her big bad seizure right in the hallway of the school...her teachers surrounded us. The Nurse came running out of her room. The Nurse says she is foaming at the mouth and to call 911...The Nurse is almost yelling that Madie is "foaming at the mouth" and looking at me frantically saying "that could mean NO BREATHING"...
Within say oh 3 minutes the abulence is there..and two cops.. Jesus Henry Christ....is this happening???? (yes I think Jesus' middle name should be Henry..)

I try to explain that they just dont understand that this is what happends...she is spitty...of course her drool is going to be all over...she gurgles when she seizes..her body is is CRAZINESS!
I tried to tell them that I have dealt with this for FIVE YEARS! That maybe they need to read up on seizures and watch some videos or something...I was getting really defensive. Feeling like if I did not accept the ambulance ride that I was going to be scoffed at big time.
Then the Police Guy came to me and told me to calm down...oh lord..johnny law is going to take me in now?? Calmly explaining that everyone wants what is best for my child and that everyone is just concerned with her "spaced out state" that she could seize again.. AGAIN I try to explain that she usually does not seize more than once at a time.....she spaces out after for what seems like forever and slowly drifts to sleep! What do you expect a person to be like after a seizure? They say it feels like you have run a marathon and your body is spent..just imagine her little 33 pound self?! But I did not yell...I just cried and loaded up madies adaptive stroller in my trunk as the EMT guys loaded madie into the ambulance.
Fuck.
45 minutes to get to Hospital...by then madie was drifting in and out of sleep...wining between being bugged with monitors..stickys wrapped on her sucky thumb.. and bumps in the road..I wanted to scoop her up and run home..make her warm bottle and let her snuggle with mama..:(!!

I could not have loved my Husband more that he ran from work to meet me there...whew. He kinda took over holding her and talking to the nurses..while I was just spent from the whole ordeal. He was Awesome Man. XO

The Nurse was awesome as well!..she pretty much sided with us..but also saying there were 2 people in front of us and it could be a couple hours till madie is seen...We told her that these seizures happen and school wanted us to come to ER.. She said the FIRST thing that actually gave me a sigh of releif..."Some people just don't understand that this is our life...that we (mom and dad) know that our child will be Ok and we know her best"
I knew she was overtired yesterday..I just knew that all the noise and being pushed in the classroom and over stimulation...was taking its toll on my girl. To try to explain that overexertion can bring on a seizure was hopeless..to try to explain that her lack of sleep and over tiredness can bring on her seizures was again hopeless..
To explain what makes her grumpy is super hard..Somedays she will be happy only being carried or in her highchair... some days I cannot make my girl happy! Shes CODDLED OKAY! I SPOIL HER ROTTEN! OKAY! sigh....Some days...MOST days..she is relatively happy!
To try to explain how sometimes my girl just needs a quiet minute to breathe and be comfy was hopeless...
I know know know that school is SO good for her! She needs the exposure the exploration..the learning! But Miss Madie is not your typical kiddo! The school KNOWS that!
This all comming after the teacher tells me she has been grumpy at school and maybe something is wrong that she must be crying cause she doesnt feel good...
Do I have to explain over stimulation AGAIN?? Ya get me right seizure peeps? (yo)

Do you think I know what makes her tick each day?? Hell NO! It trial and error! STILL! But I know my girl better than anyone ever will...DO I know when she will have that nxt big bad seizure? Hell no! I know that her deal is usually sleepy. hungry. bored and just wants mucho attention one on one... overtired. or sick.(which is rare!) I do know that she only had one seizure last month! so hot dang!
It was a Long....day...madie zonked out early..mom and dad zonked out early...it was a day.
SOOooo if any of you have had to ride in an Ambulance with your seizure kiddo after a big bad seizure against your will..and or feel like everyone is judging you if you DONT go...you get it. And that's all I have to say about that.
Thank you Forest Gump.
Today...A new day. Maybe Ill just keep her home so we can play and nap all day..:) maybe go to Old Navy or the Bookstore and poke around..maybe sit in "Big Bucks" and have a coffee.
Oh My sweet Girl..
Me.
PS Stander will be here in about a mo and half! maybe sooner! Awesomeness!

Snow And Snow

2012-01-22T10:08:00.002-05:00

Grandma bought Madie this super duper blow up slead...OMG I was cracking up at how stinking cute madie looked in it! We went to our small side yard and pulled her back and forth...snow was comming down and madie does not own mittens...LOL I KNOW! Heres a small group of pics from our snow fun. Now this is the stuff I just love doing as a family..all 3 of us. xoxo:)

Lil Updates.

2012-01-17T09:01:00.003-05:00

Falling over at her Noisy Box and laughing...this little scene just melted my heart.
2 Big Seizures this month for my miss madie...and just one last month...twitches seem to be a little better too...they still come here and there but its by no means like every hour! :)! This Diet....The Amazing ketogenic Diet... wow. We just if I have not said already increased her caloric intake and lessened the amount of bottles she needs in a day.. 5 was a little NOT happening.! Sooo since then I suppose she has been good! So far! She is also finally over all her cold and ear infection and is in a MUCH better mood and sleeeeeping thru the night with no tears! whew!!
In Scary news... Baby girl is goin in on Friday for her updated vaccinations...I HATE HATE those times! Specially with a seizure kiddo who is so well....HAS seizures..Just know that she cannot attend her wonderful school without them! and I really don't want her getting all those terrible diseases! I see them as something we have to do for our kiddos but also afraid of the chemicals that are in them and get scared of her running a fever or just being "off". Sigh. Well the vaccination debate could go on and on...
ALSO next week in more exciting news we head to Hartford to get an evaluation for some home use equiptment...maybe get a stander or walker or BOTH for home..we have the loft space upstairs to put all the stuff...I cant imagine she wont be approved its just a matter of GETTING IT...that will take who knows...:/ Ill keep ya posted on that!
Its been a long weekend for sure..well MLK day aside..lol but its just been a long weekend..For Moms and Dads. Now this blog is always madie oriented soooo I really dont want to go into MY issues..but I am mending. (not injured dont worry) Mending emotions. Mending my heart. Mending...Soul Searching. Yeah...something like that. :)
I am also feeling pretty overwhelmed these days with LIFE. Im just repeating myself huh? Well okay then.
(brushing myself off)
Hope everyone is good and staying well...some snow on the ground in CT this morning! (Sorry Dawn...lol) Ill pack coolers of snowballs if anyone wants some!

Love, Me.

Moody Miss Madie and Adios Holidays

2012-01-04T14:08:00.005-05:00

My Little Whistler...allllways whistling.. Its been a busy holiday and quite frankly I am glad its done and over! The Tree is working on miraculously making its way back into the basement..sigh.
Miss Madie has been a VERY MOODY! Like high pitched wines when she is upset and does not get whatever it is she wants..Its been tough. She has been waking in the night usually at a convenient time of oh say 330am or 4am..with the same high pitched wines..
In our defense for ignoring her..when you take her out of her bed or carry her or even put her in her highchair to just sit..she is happy as a clam. HAPPY! Whistles and smiles and even a giggle..TRICKSTER! I debate to take her to the pediatrican for that reason alone!

We have alllso been pretty sicky in the house as well.. I am just getting over feeling about 90 percent better from a terrible cold and cough...and madie was the same. Soooo maybe her throat is bugging her but I slap a big fat bull honkey on that! I get to also hear from school that she sounds very congested..well DUH! If ya heard the ol dry nasty cough she DID have you would know that this minor loose cough is really nothing to worry about. But I think that school has more than hinted that I NEED to go to pediatrician...and what? wait for an hour in a packed waiting room since I had no appointment then wait another day in the exam room for the same reason? OIY VEY! Sorry, Really had to vent about that. I was feeling really overwhelmed by the whole thing! AND madies teacher wants to help me establish a at home routine for madie as well..and i was getting really defensive about it. Only since I am having enough trouble keeping her content let alone in a routine! ack. I should take the help...that is all her teachers want to do is help me.. Just alot of other stuff going on too...really really crave a sense of peace and happiness in my home.

I just hate when people who I know mean well tell me what I should and shouldnt be doing..pisses me off! Ive taken care of her for 5 years...ehh....sigh..
Growth Spurt? BOUT TIME! New Milestone ready to be reached? OH I CAN DREAM! I WISH! but mayyyybe...lol Has to Poo? Well she has been pretty good in that dept and the ol huggies are taking a beating! whahahaha! Spoiled Booger?? hmmmmm.....
Other than that things are pretty calm in vanNoord Household. :) Sometimes just a good hug from the hubster can make a whole crummy day go away.

Well like I said....Holidays are done. Hubster is back to work. Madie is back to preschool hopefully making thru her day in a decent mood..but after the week and half she has been home I can only say NOT MY PROBLEM! whew. lol.
Just hope she can get back into her days happily this is getting old kiddo
No word from the state eaither on my helper for madie :( but hangin in there. Arent we all?? Oh and madie has 400+ people ahead of her on the Katie Beckett waiver..please no breath holding you'll pass out!
Whoops lots track of time..gotta go get my little booger from school or it may be suggested to me that I get to pick up earlier.
(that was sarcastic)
Hugs to all our sweet kiddos and to mamas.
Me.
PS hit up that Gymboree Sale mamas! ooooo its grounds for some hyperventilation its that good! ;)

Holiday Season is here!

2011-12-21T13:20:00.007-05:00

All kinds of presents under our lil tree now! Its feeling so festive in the house with the Tree bursting with presents and the thoughts of raspberry cheesecake and ham dinner is looooming in the future :)
Things have been going pretty well for Miss Madie... We traveled about 3 hours to Jersey to see my side of the family last weekend. It was a long day for Madie boo..she was not much into eating her ketos..which I believe led to the big bad seizure at 3am Sunday Morning..:( BOO! It was just alot.
Seeing my family was great..some of them I only see on Christmas each year! We ate yummy foods and exchanged gifts and gift cards and cash and played games and won prizes..it was so fun. My Grandmother who is 82 plans the whole thing each year...we play games with numbered tickets and we win prizes like oh...say a new pair of slippers..but those slippers may have a $20 in them! :) or say we may be going for a 25 dollar card to Kholls or even the grocery store! (which I won 2 20 dollar ones for shoprite!) and we made a rule that we did not have to buy presents for everyone just the little kids...lil cousins will and kevin and lil patrick. and of course madie. :) SOOn we will have TWO more babies on the way come jan...my two cousins are pregnant and due annnyyyy time now! Madie made out with some cute outfits and even Miles won some new slippers...lol He also got a pair of womens argile socks and that cracked everyone up! I told him I am stealin them and he is all gung ho like "I WON THEM!" LOL
So yea...Grandma is huge glue in our family. Oh how we love her dearly. I wish we all lived closer. CT country is sure my home over Jersey but it is still hard to be so far away all the time. Hoping to get in a visit this spring or summer when its warmer..I know Madie has a spring recess from school so that may work...ehh dunno yet. :)
On Christmas we will head to inlaws which is only 10 minutes away(whew) and spend the day there. Looking forward. I will make a raspberry cheesecake and some world famous Piggies!! :) Other than that well we are just hangin in there. Things are happy in our home...It feels good. Miles and I are going to plan a weekend away sometime soon without Madie-San...I am not good at planning trips but Ill work on it! We TOTALLY need it! I cant wait!
Well all I need right now is my two loves this holiday season..cant go to any store and buy that :)
MAdie went little over a month (haloween week) without a big grand maul seizure...just wish they would just GO already! We have increased her calories and carbs just recently which doesn't require as many as 5 bottles a day! We can incorporate some mushy foods in there as well. :) haWe also had blood work taken to see how she is tolerating her ketocal as well..that was the tough part :(. BUT BUT other than her gettin blocked up in the poopy dept she is tolerating it very well! The Amazing Diet...Just Amazing.. SHE is Amazing...My sweet Boo Boo. We allllso have to get about 4-5 pounds on her little skinny mini! She was weighing in at 32 pounds...she is getting very tall but not getting too heavy! Gosh don't we alll wish we had that problem! SOOO hints the increase in her calories and adding some mushys here and there...hopefully in a few months she will be a lil heavier! (ohhhh my back!)
Someday my girl. Someday.

I hope everyone is having a wonderful Holiday Dunno what everyone celebrates! lol
(hugs)
me.
PS Blogger would not let me spell check...lol bear with me!

guardian angels by my side..

2011-12-02T17:34:00.008-05:00

I am by no means a religious person..I really did not grow up going to church. Sometimes I dont know if I even believe in God..But I do know that I have guardian angels. I lost people in my life that meant so much to me..beginning with my parents when I was just 16 and 17..then my very best friend since I was 5 when I was 22..from Cancer. And then later in life I lost my grandfather and then after I was married I lost my Uncle. both to cancer. My Uncle was an awesome guy. My Dads brother...he was a florist for many years...did my wedding flowers for me. Pretty simple order of my bouquet, bridesmaids and corsages... all for FREE. a gift to me that I will treasure always.. I miss him making me laugh. He was so much like my father! My Grandfather I remember having an acorn hanging in his garage and when he pulled in the acorn would hit the windshield and he knew he was in far enough. He and my grandma were married for 5o years... he actually taught her how to drive very late in life..being married in the 1950s was all about the wife who cooked and cleaned and took care of the children...never mind having independence like DRIVING! I had not seen him for a few years after my fathers funeral the family was not so much getting along...a long story that I will not go into.. But I eventually reached out to the family and when I saw my grandfather again he was very Ill...but we had one last Christmas party before he passed... When he passed my Grandma re-married and sadly THAT guy died too Allllso from Cancer! Not My parents though...they were different deals... My Grandma is such glue in our family at 82 years old she is still taking trips to Atlantic City with her sister my Aunt Ruthie...LOL She has not remarried but jokes that when she goes to A.City that she is husband hunting.. We will all gather together in a couple weeks for our Voegler Christmas party and exchange gifts and laugh and eat and drink and be merry.. its so fun!! We play games and win our presents basically...and we only buy presents for the little ones..who cant play the games..:) Its Awesome.
But all that aside....I suppose I do believe in guardian angels....when I feel really down I pick one to talk too..or cry to..Mostly my parents and my friend....whom I miss everyday. The 3 people in my life who truly understood me.
Things have been pretty stressed at home. No lie. Madison has been just fine....her usual lil self such a sweet little soul she is...somedays she hates preschool and others she gets great reports of giggles and noises and wide eyes.. I have been working like crazy person to get Madie approved for grants and special programs that can get her standers, walkers, a home helper.. stuff like that for HOME! Weather thru the school or thru the state or thru the hospital..Im pretty stoked about it! Kinda keeps me going these days....all the hope and love I have for my Madie...and how hell or high waters I am going to get her these things! We will also go to Hartford hopefully come January to get Madie evaluated for some equipment to speed the process.
Pretty soon we are also going to go chop our fresh tree for christmas and get the holidays kicked off..We also travel to Jersey to see my side of the family as well. In meantime hubster and I are slowly getting to know each other again...holding on to love with all my might! I am thinking of attempting to surprise him by getting tickets to see a beatles tribute band...although he will find out about it if he reads this blog soon! I guess just my way of making things happen! Pushin his hiney to get out with me! lol
love to all the mamas and our sweet little ones. The lights of our lives...with a side of hubsters. Say extra good prayers or send good thoughts or karma or whatever you preach over to sweet Reagan and her mama...that they both find relief in time for the holidays :) I will also give some shout outs to my Angels. ;)
xox
Me.

Beach Pictures

2011-11-14T13:13:00.006-05:00

Some Pictures from our time at the beach..:) and a picture of the two most loved people in my life. :)

Still here!

2011-11-13T09:51:00.004-05:00

Yeah I have been hiding out away from the blogging world lately..just kinda working out some things. This blog has always been about Madie with splashes of information about me. I kinda like it that way. This Past month has been a tough one for me. But Im workin thru it and so is Hubster (I hope)
I will miss him when he travels next week but I will just think how great it will be to see him when he gets home. Madie has preschool all week so Ill be able to keep her busy..lol She is certainly a happier girl when she has school..so much more entertained than at home. I am however working on my cartwheel technique slow and steady...
In other news we were in fact without power at home for 10 days..yup. It was tough not being in our own house but we were also blessed to HAVE a warm places to go where some people did not! Shelters were opened up and people were like running for water at the grocery stores it was a ghost town with the businesses out of power as well for days on end...Crazy. We lost a fridge of food and a few frozen things..
Miles and I were up the night it was snowing and blue flashes were coming thru the windows as transformers were being blown out.. freaky! I think it looked as if we were going to be abducted by aliens! Or something from the show LOST..(sniff sniff..how I miss it)
Well statewide power outage happended in just one night of over a ft of snow! then we had days where it was seriously 65 degrees out! helllooo global warming?? There were power companies from all over coming to help.
Madie and I spent the week in Niantic at the beach house and Miles had to travel for work so he was in a hotel. Kiddo was a trooper with her 5 year ol self in her porta crib..was not sleeping very well..and had one big seizure one night we were there..:(
I could not complain about the home cooked meals and family surrounding us.I did contribute 2 nights of cooking :) I would go check on house and the poor cat every few days...but things were terribly cold in there..staying in the 40's inside! while outside was gorgeous! weird!
SO now we are nestled back into our home for a week now and things are getting better. The neighborhood even had a re-sheduled Halloween I am looking forward to when Miles is not so busy at work for a few months and has a 4 day weekend for Thanksgiving...Spending Thanksgiving with my two loves is all I need right now :)
Hope everyone is staying well and I guess there isnt much to ramble on about...nothing I really want to share now... But Im Ok. Madie is OK and Hubster is Ok. Will add pictures from the beach soon...:) She loved it! No water though! BRR!
Hugs mamas.
Me

Storms and No Power STINKS!

2011-10-31T10:15:00.003-04:00

Well happy halloween! Absolutly no plans for us. Dont even think the little ones will be out gaithering treats in our neighborhood.:( last year we went thru 5 bags!
Ct got blasted by a snow strom on Saturday night that has left us with no power in the house. AND a tree on the house but it did nit damage thank goodness!! Hubster is traveling this week and among all the drama I think it will be good for us to take some time while he travels.I have faith that Miles and Jamie will be Ok :)We will talk nightly and Ill keep him posted on the power. In meantine Madie and I are staying at the beach house which is really like comming to another state! Zero snow has fallen here just an hour from home! I will have to go tomorrow to check on the cat and get some more of madies carnatine vitamin..
Things are out in the state..even schools are all closed due to no power and the trees all over the rd you would think we had a tornado!
Sigh...it stinks. But Niantic is warm. Showers are warm. bed is warm. and we have a TV so we can check weather and power status'
Not much new going on with Madie..Seizures have been the usual 2-3 per month. School is going well as she has sdjusted to the afternoon hours. I am still waiting for her packet of papers to come from DSS so we can get some services for her too..but with this storm it may be longer.
Another Week...I will miss Husbter alot this week....But we'll manage with Grandmas help and a warm place to stay :)\
Hopefully power back before the week is up..the longest we went was 3 days from Hurricane Irene.
Till next Time :)
me

Pictures :)

2011-10-19T18:20:00.004-04:00

Reeeeally hard to believe she will be 5 TOMORROW! Happy Birthday my Sweet Angel.

Ch Ch Ch Chaaanges

2011-10-15T11:47:00.004-04:00

Well Ok. last Post a little depressing. Yup. No doubt.
WELL here I am and I am pretty excited about a couple new things. I am seeking a helper for Madie to take my load off. I sucked up my pride and ASKED. SO Monday I am meeting with Madies wonderfull teacher and we are going to go over some stuff on getting that going. I feel a huge weight off my shoulders already and we have not even gotten the helper yet! But Ohhhhh its commin!
My Poor Hubster works alot. I am with Madie allllll the time. I am exhausted. I have lost touch with myself....my joys. my crafty side. My fun side. My smiley side. And my husband side. My Love. :( Dont Give up on me. Im commin back!
I am also seeking my own therapist to deal with my Anxiety and Depression. I have been resisting for years. Its TIME. I feel like my world is crashing around me and with me helping myself it may not. Trying to not drown myslef in a bottle of wine and be upset. One Day at a time for that...ONE day at a time. Going to bed earlier and resting..even if its just closinfg my eyes and resting..Was up at 430 today and was not about to go back to sleep. Bugger.
I may not blog for awhile I just need to clear my head. Figure out life. Figure out myself. Hubster is clearing his head too. Fears of unknown plague me but I push on. My Sweet Angel needs me. My sweet Madie will be 5 years old on Thurs...I cant believe it.
Just Remind myself to eat and stay well. What happends happends. These new changes I am seeking are going to be Awesome. With or without some people.
Madie is well. preschool has been goin. She has been eating her Keto well. She has been pooping well. She has been happy. And soon I will be again. :) I just hope others will join me. :)
(((hugs mamas)))
Ill hang in there if you do.

Remembering Each other.

2011-10-07T14:51:00.010-04:00

`There were days. Days of Pure Joy. Days of being Spontaneous. Days filled with Kisses and over the top love and excitement! There were days! Days we MUST find again. Days that have become so mundane and repetitive and tiring and there has been no time for that time. US time. Jamie and Miles Time. We have forgotten about each other. We go about each day and each day comes to an end and each day begins and they just seem to blend into each other.
When you have a child with special needs its the biggest challenge you will ever face. EVER. Oh that and Marriage combined WITH a special needs child.
Its a baseball bat to the head kind of reality check. A WHOAH take moment and remember each other. HELLO?? Im over here! Im your WIFE! Im your HUSBAND! hoo hoo!! helllloo?!!
It pains me. I feel my heart ache. I miss the old days and I know that I cannot go back in time and have that life again. if time machines existed maybe go back one day...ok Im joking about the time travel thing.
Things have been tough. My Life revolves around Madison and I need to get myself back. Claim Myself!
I want to work out something with Madies school and care for Madie. Like a sitter type thing. Also work out some kind of spend the weekend or an overnight with Grandma sometimes..say oh like once a month..(haven't run that by her yet..lol) Maybe go on a spontaneous trip to Anytown USA. Go see a cool band and stay out late and screw the consequences of getting up early with madie! (hints the overnight trips)
Sigh. I dunno. Therapy?? Should I go to Therapy? Should WE go to therapy? Can we make it thru this? Can we find each other again?? Im here! really I am! I am under this tired face..these pajama pants and messy hair...Im here. I just cant find me.

I miss it. I have known my Hubster since I was 18! yes, 18..but we did not date right away we kinda began dating when we were about 22 Id say. (or at least I was.) and we dated for 4 years till he popped the question to me. then we married a year later in Oct O5. We have YES been thru alot. I am not going to go into the entire Jamie and Miles Saga...but we survived it. We did it. Together! We got Pregnant very quickly. Too Quickly. But nonetheless were excited and scared about it at the same time. Madie will always be unconditionally loved and is so pretty...just so stinkin pretty....It breaks me how pretty she is. How sweet she is...
Now this is the biggest challenge we have faced... Making time to remember each other when we are consumed by a special needs child and Miles working lots of late days....by days end its KAPOOT. ZONKED. Exhausted. Ready for nothing but bed..bed.
My eyes are dry today from the tears I just dont know what to do. I guess we have to tackle this head on..talk about it. Im Terrified. I need this whole thing called life to work. And crap, its so hard.
Unhappy with the same ol same ol crap....and nothing else. Going out to dinner is one thing. Ok we do that all the time.. maybe just get Madie to bed early if that is ever possible and take a moment and enjoy some dinner at home or a movie or whatever..sit at the table instead of in front of the TV and enjoy.TALK LAUGH LOVE.

I feel right now babysteps. I am sad I am feeling like I am walking on thin ice. We both need to get to know each other again and remember why we fell in love those years ago. I Love you Hubby. Very Much So. Lets not Break. U and Me. Lets do this~

Tra La la la la

2011-10-02T11:04:00.002-04:00

Madie has been a mess with constipation the past couple days...I gave her a suppository at 430 in the afternoon yesterday and STILL no movement! Then we gave her some Miralax with her Keto this AM about 8am and now she is cryyying and has fallen asleep. Its 11am now as I type. sigh....
I fear if I keep on giving her stuff she will have a huge explosion..Well I guess thats good cause a tub tub is in her future tonight anyhoo..haha
ANYHOOOOO Poops aside. Its a gorgeous day in CT..expected to rain a little but ya fooled me. We are small town folks and there is a fair going on just this weekend nearby and we will go putz around that for a couple hours looking at animals and Ox Pulls..haha maybe grab some junk food and meet up with friends along the way. OH yesh they have the Ox Pull AND the log chopping! I kid you not! There are also some cool craft booths and food booths and tents that have baking contests and photo contests etc etc...
Hubster scrambles to get some school stuff done so we can go soon! (furthering his Science Degree)
Well anyhoo...not much else here. We had our 6 year anniversary yesterday. Kinda did not make a big fuss about it we went to dinner and came home.We had tried to go find a place where we could just go kick back a couple drinks after but on Saturday night places were wall to wall.. Traditional Gifts were Iron and Candy...I have to laugh when I get a Cast Iron Pan and some Peanut Butter Cups. Haahaha (all for giggles of course!)
Yeah so uneventful but a nice time nonetheless. Thinking back on how fun our wedding was and how we did not get home till 3am and I passed out with about 50 pins in my hair..haha And boy that Honeymoon was the best vacation ever!
back to work and preschool tomorrow...:) Gotta get madie some fall clothes..long sleeve tops and leggins...this kiddo is getting BIG! ha
hugs
Me.

Weird...

2011-09-26T22:15:00.004-04:00

Have seen this going on in Madie world lately...sigh. A new type? or just her fighting off big ones?? I guess not as scary as a tonic clonic but STILL...ugh. This went on for about 2 minutes...Can you see the twitches?? I really hate to post seizure videos but this was weird and the tounge was going all wacky too..this is so not madie..:(

Teacher Meetings :)

2011-09-24T09:30:00.003-04:00

Its that time again! Madies Teacher came to our house yesterday to give us a run down of what we will be discussing at her PPT meeting this coming Tuesday..
First and Foremost it has been reported that her seizures are almost non existent at school! Making her days much brighter and happier. We can call Madies teacher Mrs L. Mrs L. said that the main goal is to just keep Madie happy in a happy school setting. She says that madies mood is not consistent and sometimes they do let her take her 10 minute naps in her stroller..She is certainly getting used to the new afternoon hours slow and steady. Mrs L told us she has had kids who literally sleep the whole day away so she is glad that madie only SO FAR has been requiring a quick catnap here and there. They inculde her in all the activites the other kids are in weathor she is in her stroller or sitting on floor or at a chair at the little table..(they have a chair with straps on it for her) Mrs L just said they will cater to her..and they even have a quiet area in the classroom with books and beanbag chairs and comfy mats to sit on that they can take her too when things get too overwhelming. Gosh we are so blessed.
Madie has also been doing really well with cause and effect toys and Ipad Apps.HOW cool is that they have an Ipad there! Madie continues to love her old favorites of vibrating and light up toys and her vibra mat they sit her on they say just calms her and makes her happy. She is also doing well with alertness and turning to sounds of her little peers or the sounds of her teachers voices..looks around and takes in her surroundings. She continues to do well in swings and her OT is always a hit. They said they put her in a blanket and used it like a hammock and swung her in it she loved it. lol
Mrs L also said that madie hit a toy with her foot by accident and just perked up like wondering where that came from..lol If ya know Madie her feet are like her extra set of hands. she is like a monkey. Yes she does have her share of monkey jammies and money hats..lol
And the Whistles! Her favorite noise to make I sware she will whistle back..lol!! love love it.
Now PT is another ball of wax! Sometimes are good and sometimes she will not have it. When ya make the kiddo work! lol They have been using her stander every day at school and she can make it sometimes up to 40 minutes in it. They have recently also tried a walker and have gotten her to hold onto it but have yet to be successful in that one. I feel like ya gotta get the kid to be able to balance her stand before we talk taking steps!
She continues to be very behind her peers in many many ways..I think a big goal is to try to establish a way she can tell us what she wants...or use a toy or communication device to have her hear the words or sounds and see her response..which has been positive as far as her toys and Ipad apps go. :)
I cannot say enough about the Ketogenic Diet. I urge anyone to at least TRY it. It has brought our little Madie sparkle and whistles and eye contact and made her even more demanding than ever! lol.. Oh and to keep her happy. ;)
Seizures have been 3 large ones a month...it has been that trend the past few months...I still hold my breath for 3rd one this month that has not hit her yet..Oh gosh I hope I did not jinks anything :(
Still alot of what ifs and unknowns for Miss Madie..I dream of her being physically able but dont know about that. Does she perhaps have a condition that will prevent her from ever walking? I can only say that she has amazing people working with her 4 days a week and the generosity of the school has been amazing!! We got madie up and going in what they call the Backpack Program that gives madie weekly goodie bags of usefull things...diapers,wipes, shampoo, bottle nipple re-fills, lotions...all kinda of stuff! saves us so much money!! specially since each month we have to muster up nearly 700 dollars for her ketocal since we have to send in claim forms to insurance instead of paying a co-pay each time..sigh..
OTHER than that...lol all is going well..just one day at a time. My Back has really been killing me I think this kiddo is going thru a sudden weight gain that is taking its toll on me. I feel so old! I should certainly be the spokesperson for sagging lids and dark circles. uhhhhhhh!
Today Hubster is home from a week long of travel and a sigh of relief goes thru me. He will be back traveling again half the week next week then hopefully no more travels for awhile. Unless he takes me on a fabulous vacation or a crusie...LOL
Just Sayin.
Well Till Next Time.
Me. xo

Small Updates.

2011-09-16T09:34:00.006-04:00

I think everyone is getting new haircuts these days! Took Miss Madison in for a couple inches off..her hair is insane thick! She screamed the whole time but the moment I got her out of that salon she was happy as clam..sigh.
Just hangin in there on the home front these days. Preschool had a rough start for her she was usually falling asleep before or during since she is in afternoon preK now..sigh..but just yesterday she made it thru the day with minimal fussing..lol keyword MINIMAL...
Two Seizures so far this month..one on Wed afternoon..but we are hangin in there.
Soon we will have a meeting at the school hopefully hubster can come too and we will be talking about how madie is doing and what their goals are for her..Goals..sigh..get her butt up walking! I can help but read sweet Zoeys blog and hear that her therapist does not see Zoey ever walking..
We had ONE doctor tell us that Madie will never walk and I cried and cried and cried..he was all asking me if I was Ok..AM I OK?? Oh yea sure Im GREAT! Eat Shit Buddy! That was the end of him! Madie continues to have no balance on her little feet and low muscle tone in her arms and legs..Feels a bit stronger but the balance and the ability to hold on to whatever will hold her up does not exsist.
I still Reallllly want to get some more genetic testing done on madie but its never me who can say lets do this test or that test...alllways have to get doctor to agree. If you have been reading my story long enough you know that all the tests we have done on madie have come back normal! NORMAL! which always gave us more hope that thins would come to her..she would GET it...just give it time... after all..she is normal by the way....sigh.
I really dont know where to begin.. if I try to THINK about where to begin my anxiety gets high. I just kinda put all that on the back burner and as preschool begins I just kinda go back into the same ol routine..sick of appointments and doctors...maybe more giving myself a break than madie.. maybe I just dont want to know. Just enjoy her as she is and accept it.
I hate fears of unknown.
These days she is OK..happy whistling and rolling that tongue and full of giggles and loves to put her weight on her feet when we play standing..pushes with those lil knees and pushes and pushes...will she maybe crawl?? Scootch? Dunno Kiddos.
Will She Will She Will She.
Today we worry none about that and enjoy this awesome fall day in CT. Read my Book and maybe get a snooze in my day at some point. Just lazy wonderfulness.

PS can someone make that BIMBO bread commercial go away I have been singing that song for 2 days now!!!

"Does she have a Syndrome?"

2011-09-07T17:09:00.009-04:00

Ive never had anyone ask me "what is wrong with your child?" Most just approach madie and say "Hi" and smile at her and tell me she is so cute.. and when they get no answer from the gal who could care less and probably doesn't like them in her face they just back off...I never feel the need to go into she doesn't understand or care less about you so go away..lol Or the Ol "She has a unknown disorder with hard to control seizures" thing..But its tough. I just want them to let me poke around and chat with madie on my own..even though they are just being nice. Perfectly kind strangers who say "Hi hi hi" over and over and madie just munching on her hands and making noises and faces..breaking my heart that she just doesn't say a simple "Hi" to satify the curious. Sometimes I just go with the Shes sleepy thing just to satisfy them.
I wonder how it would be to raise that Normal" Child?? I wonder how people deal with that child who runs around all over the house exploring and sometimes breaking things or coloring on walls..I would flip my lid! But am Envious beyond...
When we go out to dinner she is always offered a booster seat or a highchair and we decline saying that she will be fine in her stroller...sometimes I think folks wonder why we do not put such a big girl in a booster but screw em. let them think. I like when they offer crayons....lol (more for me to doodle with!)

I was at the consignment store today and was the only one in there walking with my little tongue roller and whistler thru the store..when the woman who ran the place flat out asked me if madie had a syndrome..Eh? I was kinda thrown off by the blunt question but then she began to say that her daughter who has some syndrome I cannot pronounce makes the same noises as Madie..But to just ask "Does she have a syndrome?" was kinda weird. She was nice I guess but I certainly did not want to go into Madies medical history. I just told her that she has a seizure disorder with no name right now. That she is delayed and that she will be 5 in Oct. Awwwwkward! She was already kinda unprofessional on her phone talking about her rent for the store being due...ehh LOL what can ya do!? :P

Most would as us how WE take care of a special child and that they could never do what we do..I just say that its all I know. My Sweet Perfect Madie. We have the ability to adapt wherever we go..bringing all we need with us to keep madie comfy. Of course it breaks my heart not knowing if my madie will ever walk or talk or write her name on my wall..BUT as we allllways say we take it one day at a time. What else can I do? If I loose hope and faith for my girl I wll be nothing..that is the honest truth!
Today she has been very constipated and sleepy...barely a nap out of this kiddo...she was awake in her bed at 530 making noises which progressed to her squawking crying..which like a switch stops when anyone walks in the room to get her out of bed. Sigh...
Sorry Kiddo..this mama is not up till 730-8 and even that is too stinkin early for me! LOL She loves to whistle...its the funniest when a good loud one comes out. New Noises are always welcome Miss madie. :)
Hubby and I are hoping to get out to dinner tonight early enough to get home and get madie her meds and to bed...ehhh not a date night since madie is coming but she is USUALLY ok in restaurants..Just get her content (and mom a glass of wine) and with her noises and super cuteness she gets smiles from all who pass. :)
I guess I will leave you with that. I hope everyone is happy and well..Please extra good thoughts for Miss Reagan in the Sweetpea prayers section over there of my blog she is having some yucky tummy troubles hoping she gets over that soon. I will catch up on all your stories this weekend.
Hugs
me.

Whistles and Updates.

2011-09-04T09:30:00.008-04:00

What I do know is Madie loves her giggles and whistles these days. Yup she can whistle! if ya whistle for her she laughs and purses her lips to do the same. Very Cute.
Alot I guess going thru my mind these days I was inspired to post late last night but was feeling that if I did I would be up way to late.
Madies Bloodwork came back excellent. She is getting all her vitamins and minerals and is hydrated well and her organs are functioning..Depakote Levels are unknown right now I did not hear from the nurses I heard from the Nutrritionist..to be continued.
We were also victims of the dang hurricaine Irene that swept over CT knocking out power and beach homes all over the state. We were without power for about 3 days..on the 4th we were UP!~ YES its sucked big time. We are fortunate enough to have grandma close by so we stayed there with showers etc. Whew. I am glad to be home and when I heard there was power back on I was outta there like a bat out of hell to get back home to the comforts of home. Madie was a trooper. Sleeping in the itty bitty pack and play. We have friends who have been without power for 5 plus days..I just hope everyone gets their juice back soon.
Had Preschool Open House last Friday..madie decided she was going to go to sleep about a half hour before we were supposed to leave so we were a little late...It was a big mistake going..all she did was scream and cry and reach out to me the whole time I was making my poor attempt to god forbid socialize...sigh.
She begins on Tuesday after Labor Day and although very behind her peers PreK here she comes! New extra added day per week and new hours. 1230-3 on Mon-Thurs. I am really nervous that she will be all thrown off and fall asleep at school or just get over tired or I dunno....JUST LET HER GO MAMA! LOL. I am still not ready to put her on a bus.....although I really think she would like the cool ride to school...they would probably have an adult to ride next to her too...
Constipated yesterday and was barely eating her keto...which led to big seizure in the night...sigh. Today she has been kinda lethargic and fussy..stil no stinky pants. I hate to resort to the suppositories but sometimes I just gotta break the damn dam. Poor Kid. I can hear her waking from a short nap right now a little winey.
I AM believing this Keto Diet is helping my Girl..Just have to get her to EAT. sigh...I have been luckier with her turkey and chicken all mushed up..going to try beef..although I am not a big steak eater but maybe Ill set aside some cooked ground beef when I make hamburgers tomorrow for our BBQ...hmm maybe baby..
I was also trying her turkey yesterday and she was happy as a clam eating and making her noises and smiles...even opening her mouth for the spoon! But then just as fast as she was happy she was upset...have no clue why! But she ate half the jar! dangit! What is up with our kids and their switches! Do you all get that? Like super happy one sec and then BAM out of no where the tears and screamin begins! I reeeeally wonder if sometimes its just a lil gas or her hard poopies tryin to make their way out...OR maybe some kind of tummy commotion with her meds or Carnatine? Its not ALL the time but like I said a switch goes off! I guess I still love ya bipolar kid..:)

Seizures continue to be about 3 a month...We plan on meeting with nutritionist in her clausterphobic little room at the Hospital soon in the next couple months..and a follow up with Nuerology in Dec. It never stops breaking my heart when she seizes...although not so frequent they are strong sums a bitches... I just wonder if she was compleatly seizure free what would she be like? Oh the Dreams I have. I just want her little legs to get strong and be able to get herself up. But what are strong legs when ya dont have the brain connection to understand how to get up? The Process...ya know? Grab and Puuuulll up. Things that other kids Just DO. It amazes me so much how kids just do things!
Well I can go on and on and I dont need sympathy from people or words of "Dont Worry" cause reguardless of that I WILL worry..I mean how old is too old to give up hope? One day at a time Boo Boo.
AnyhoOooOO..I am scramblimg around to get the house clean enough for our small gaithering of folks tomorrow...I am a freak with yucky dirty corners...I hate em but it takes alot for me to get down and scrub em! ICK and ICK.
Well I guess that is all the rambles I have today..
Hope everyone is well and having a great weekend.

Photo Sweetness.

2011-08-27T21:06:00.007-04:00

If ya know me well you know I am wiz with my camera....I still have dreams of a Nikon or a Cannon someday BUT am also a firm believer that you dont need a fancy camera to take decient pictures if you have a nack for it. :) and I HATE HATE HATE disposable cameras! LOL heres a few of my Angel to ooo and ahhh at her cuteness..hee hee. Hope everyone is well and healthy and happy...Ill give ya an update on this mighty hurricaine suppositly headed my way...

Turkey for me Turkey for you.

2011-08-21T14:28:00.007-04:00

Ive tried to start a new entry about a million times and just dont have the most organized thoughts lately..Ahhh A.D.D.
First and Foremost Diet as far as Madie eating her Keto is going Ok. She still just will not eat REAL foods...that is a whole other can of worms I really dont want to go into. I just can blame myself for not trying enough. Well a couple days ago she ate mushed up Turkey which was awesome. SEE

Seizures have been oh....well..she had one late at night on Friday Night..Very strong when they hit her. It was heartbreaking but late enough that she just went back to sleep. What went wrong? Well ur guess is as good as mine. We are heading out to get her labs done on MONDAY hell or high water! If I forget I will kick myself! Maybe we can tinker with Diet a little and get a even better grip on her Seizures...She had 3 large ones last month..(July) and so far 3 this month (Aug)..sigh. Yup. Sooo to be continued on the progress of seizures or the non progress...
Its extreamly frustrating that she does not eat FOOD...She needs to eat more Keto Bottles than she really eats in a day..at least a bottle and half short of the WHOLE 5 Bottles they suggest..sigh. IF only I could get a good solid Keto FOOD meal in the mix it wouldnt matter if she just ate 3 or 4 bottles..sigh. :(

Went out to see some of my Family just yesterday at their lake home for a BBQ...it was great to not have to drive 3+ hours since its in CT..:) Was strange to come home and not be drained from being in the car so long...lol We can get there in about an hour! :D
My two cousins (both sisters) are both pregnant were just looking great I cannot wait to meet MORE family members! One of them already has a baby and is pretty nervous about adding another to her family but I have good faith that she will do great :) OMG Madies lil cousin Patrick is the most squeezable rolly polly EVER! hee hee...oh I just adore him. Madies older couisins were there too(my dads sisters kids) fishing off the dock and digging for worms..they were hilarious. I missed them all so much it was nice to spend the day :) And of course I cannot forget My Grandma was there too. Oh how I wish she lived closer. she is such a glue in our family :)

Hmm what else...Well Summer Program for Madie is over now and we enjoy a three week vacation before her afternoon PreK starts. I am beyong stoked that it will be FOUR days a week instead of 3...but nervous about the afternoon hours..hoping that Madie will adjust..weee shall see! Same Teachers as Preschool AM so I am comfortable with that. Still no heart to bus her or van her to school.Just a tad overprotective and I knida enjoy chatting with the moms.
Sleep has been different too...Miss Thang is up about an hour earlier than her usual..which may be a thing of the past..lol and its been weeks and I am still not used to her waking me at 615am. She still goes to bed about 830/9 which is a relief...dont jinks it mama!
Mood Wise she has been good. She is bored. When she has no preschool she doesnt nap well..she gets grumpy at times and I am fresh out of ideas to entertain some days. Its so tough that she is not mobile and able to get her energy out and entertain herself...more self efficent per-say.
Oh my sweet Girl...there is a kiddo in there who just wants to stand and play Im tellin ya! I just know that my parents are watching over her and I and cheering her on. While I have been laying here with the laptop on my stomach typing she is pushing with those little arms on my back getting up to her knees and kinda boppin up and down in that frog sit...lol someday?? whooo knows! Each year I say it will be a big year. She will be 5 in October and we will have a little party for her for sure! Its a BIG year! :D Dangit!
I hope everyone is well...I am a tad behind in reading all your blogs and I am terrible at comments but Im gettin there :)
Time to go get the dreaded blood work for my Madie this morning!
Hugs Mamas.
me.

brain farts.

2011-07-28T15:08:00.007-04:00

Its taken me a while to fart out my thoughts. Im petty tired today. I fear saying how well things are going only to have things turn for the worse. First News is madies EEG came back pretty good. Few spikes and no multi-focals..She is still on her depakote and that dose has stayed the same..the only thing different is the DIET! Amazing Incredible Diet! She has had 3 big bad seizures this month..3. Ok Ok but when they hit her they hit her hard. Number 3 occurred just early this morning about 4am-ish.. She woke up early making it VERY well known that she wanted out of her bed. Her cries get louder and louder like she is saying "Hellllo! Hellllo! COME IN HERE!"If I get up and make the slightest noise its ALLLLll over! LOL

Her teachers and therapists have all noticed how interactive she is and how wide eyed she is as she watches things and holds things and makes her noises...I peeked in on her OT session today and she was holding onto the ropes of the big swing and laughing and laughing!!
I was at the school today helping to spruce up the garden in front that has overgrown with black eyed susan flowers and weeds...whew I was quite the sight with the shovel! Ohhh hellz yea! But anyhoo since I was there I peeked in on her OT and was just so smitten with how happy she was! Incredible!

I also asked Neurology just how long will we be on the Ketocal diet and they said that usually its 2 years but there are other kids who have been on longer..Come December at our next appointment we will discuss it further and maybe be able to lower her meds! LOWER! EEK! yes I said Lower.. I am very hesitant...but like I said only thing different is the diet..
BUT if we went off the diet would we have to go back up on the meds and see seizure return with avengence? That is my big fear.
Reducing Meds is scary but less drugs is GOOD and Id be scared but willing to take that risk..we can always put her right back on..
Shes been a little doll. So interactive with her play..loves one on one attention and bouncing and funny noises and singing..I can sing just about any song in a funny voice and she will laugh. LOL she certainly enjoys singing at school too during the morning circle time.
Oh Sweet Girl. One Day at a time.
I guess you could say Im hangin in there. I worry allll the time about Madie and try not too think tooo far into her future. She has an amazing ammount of love surrounding her and its all she needs.
We are also going to look into getting a stander for home as well thru the hospital by getting madie evaluated and referred for one maybe our friends at Anthem can pay for it. (exaggerated laugh) We can only see. :)

Well tonight we go to this local fancy restaurant for Madies Grandmas birthday dinner and then its weekend time. :) I hope everyone is well and hangin in there. I know I am. Whew.
I guess thats its for now. I bet I forgot something..till next time world.

EEGs and Good Girl :)

2011-07-16T10:48:00.005-04:00

Sorry been so long. :)
Welll things are goin. Madie was a lucky duck last week as she only had two days of preschool but one day was EEG time..
We opted for a 10am EEG this go arround since she gets up about 730 and an 8am one would be impossible to make. My wonderfull mother in law came with me too :) It was a gorgeous sunny day and perfect for going out to lunch after. Madie hate hated the hook up process..It was a woman who had run her EEG before and rememered my little screamer. I think the whole process of just holding her head and arms and picking at her hair just scared her. She was reaching out to me the whole time trying to get herself in her sit.If any of you have seen how the bundle the kids in Detroit for EEGS this was a pice of cake for her!! After that was all done and she was upset but they had a comfy chair and said it was fine if she sat with me so she slept in chair with mama while the flute music played. EEG was just what they needed. Woke from her short nap happy. I wanted to go buy her a present for being so good :)! Movements were few had a quick tonic when she woke so we shall see...Oh and maybe she will get a new tub tub toy for being so good..hee hee.
Madie has been on her Ketocal for some time now and I am unsure how much longer we will in fact be on this greasy shake mix..I would love to start trying some foods with her. Fruits and veggies..maybe mushed chicken or hotdogs..she has such horrible adversions to foods. :( Constipation continues to be an issue..poor kis screams when she goes or its an explosion! sigh...ehh we are workin on it. :)
Wellll its a warm sunny day in CT and I think we all are going to prance around our little town maybe price out some lawnmowers and hunt down some treasures at some of the cool used stores in town..Hope everyone is well and the kiddos are happy. Madies Auntie Brenda is in town from Illinois as well so I will plan a dinner too!
:) :)

Not Really Much...

2011-07-04T16:35:00.007-04:00

Happy Freedom Day!
4th July Weekend kinda turned into a rainy weekend in CT...but we had Sat which was nice and sunny and we spent the day at the families beach house spending night into Sunday. We had just seen each other for our week at outerbanks NC but it was still good to get together. :) Madie has been really good with seizures..not too many. But Sunday I guess we were due..my sweet girl got hit TWICE. uuuugh. She was reallllly sleepy most of the day so we cutt our weekend short and went home to relax. It was all good in the end since it just rained and rained all sunday. Diet is still going..sometimes madie wont eat her bottles and some days she will..but we keep on. She will have an EEG on the 14th of this month. A short one. I dont understand the short ones..I mean what the heck are we really going to find. They hook her up and get her all gooey for such a short test. I say check us in and give us an overnighter. Reeeeaaally do an EEG. But I guess that is what doc wants. We have probably pushed the insurance to the limits. lol. Medicine remains the same.

Madie and Grandpa at the beach Outerbanks...lol Ohh she had those legs up real hight as they got closer and closer to the water...
Such an unconditional love and sweet bond with her Grandpa..:) Madie even has her own dingie boat named Miss Madie. hee hee.
Things are going I guess..we are more or less back into the same ol same ol...Summer program is going well only on week 2 of 6 but those weeks have flown by!
OH another thing I wanted to chat about...FOOD. No not for my bog rear end but for madie. FOOD. Will she EVER eat it? So many "will she evers" for my Angel..sigh. There are pleanty of weird things I can mush up for her to try..I havea great food processor to do this. Its not a taste thing Im sure..its the mechanics of it. The chewing..the swallow..the NON liquid things..therapists can tell ya over and over to try this try that but I still feel that when madie wants to she will EAT. BUT will at the "conditioning" and trying help? I cannot have a big kid on Bottles!?! Sigh..dunno...try this try that..I just dont know. I am a feeding therapy drop out. But what IF I stayed with it? Sigh....Cant look back on past choices now. Id feed her bottles if she walked..can we work that deal out madie??
Sigh.
Wellll anyhoooo Hubster will be home soon and I gotta get the din din ready to throw in the oven. :) Hugs to all the mamas and the dads too. Stay Well.

Me

Vacation :)

2011-06-26T14:55:00.013-04:00

12 Hours each way to get to Outerbanks N.C..I could have stayed another week. :(Lots of relaxing outdoors and walks thru shops and eating lots of great food and staying up toooo late..lol There were I want to say 20 of us.

Not really too much motivation to type a detailed long drawn out story all about our vacation.things were on and off with madie...I did not get alone beach time after the one day I brought her and she was miserable.
Madie loved loved the pool...MUCH warmer than the ocean.. I swear we sat in there for an hour and got all wrinkled. It was wonderful to do something with her and not have her crying or being sleepy. Constipation was an issue during the trip as well..we finally gave her a suppository as Miralax was not working...well we paid the price for that and she was covered in you know what!sigh...BUT after that she was a wonderfull kid! LOL

It was a great vacation..but to me a REAL vacation doesnt involve the kiddo in tow!It involves me and the hubster re-living the pre-baby days! With all her non-napping and crying over spilled milk it can get exhausting and I want to stay up late and sleep in late..LOL Ummm yeah...a gal can dream cant she?? It felt like we had to take turns staying up late..
Sometimes I would take her into our room and put the TV on low and read or just hang out with madie in quiet time...She was always happy as a clam with the one on one attention. *sigh.

There was a porch swing on the middle deck just outside our sliding doors to our room and it was a life saver! When madie was upset I would bring her outside and swing with her. When I sing wheels on the bus she lauuughs..LOL and one day I had the theme song for that old movie Neverending Story jammed in my head and she lauuughed...( I mean I totally did not watch that movie in the car!)LOL Swing time was nice time..just snugglin with my giggle bug singing random songs and making ranndom noises that made her giggle.."tee tee too too" and "dee dee doo doo" We had a rental SUV for the trip that had a super cool DVD player in it and I was on a memory lane movie kick...LOL Karate Kid, Lord of the Rings, Forrest Gump..and of course Neverending Story...

*sigh....yeah.
Well we broke up the trip getting there but sucked it up and did the whole 12 hours going home...It was long and when we all got home we all crashed. It was heaven to be in our own beds.
I coulda stayed another week.
BUT if we did stay we woulda had a pretty flooded basement... a couple days after getting home our hot water heater decided to kick the bucket and flood the basement.yup. fun times. Luckly the heater is under warranty but who knows the labor costs....uuuugh. We have a temporary fix on the thing now but we have to wait 3 weeks for the new mo-foe to come..doh.
Welll this weekend will be filled with yard work and 4th July BBQs...hope everyone is having a good one. Time for bed. :) Preschool Summer has begun too...WOO HOO! So far so good. Summer EEG on July 14th too.
:)
ME

A week off from the world. :)

2011-06-17T08:24:00.003-04:00

This one we call "Stink Eye"
Well last day of Preschool has come and gone on Wed. Madie became fussy when she saw me and only wanted to go to sleep..well there was an hour left in the day and there was a party going on that the room mothers who are more like the "party planning commite" and take their rolls pretty serious with weekly e-mails and lists of things to bring to party that others have not already taken...Well I know darn well my Madie wont eat fruit platters or baby carrots...but I still made my mother in laws famous apple cake..sigh.
It was a tough party to sit thru..I just wanted to leave and take madie home to take her nap that she so desperatly wanted to do as her eyes were very heavy..but there is that ceremony of graduating preschoolers that we have to sit thru. I sat next to madie in her huge "adaptive stroller" (refusing to call wheelchair) and watched the kiddies get their Good Play Awards and recive new beach buckets filled with little presents...bubbles and a small ball and bubble wands and a shovel...too cute :) Well it concluded year 2 of Preschool AM...two of each project and 2 of each news letter..
Next year she will move to the 4's program in the afternoons..I really cant think about that now...we will have the meeting of the minds in the fall..
Tonight I type halfway thru our journey to the outerbanks N.C..We have stopped in Dover Del at a hotel for the night. Madie has so far been a wonderfull traveler...All of my travel meals have been pretty gross I am looking forward to gettingt to the house tomorrow and park ourselves for the week. I will take lots of pictures of our little angel. For now. Its almost medicine and bedtime for boo boo. Have a good week everyone!
me

Summer is Here.

2011-06-12T20:05:00.008-04:00

Oh My Miss Madie...sweetpea. Was in a decent mood today..a little grumpy here and there but I guess I cant complain..

Spoke to her Preschool teacher on Friday and I am little nervous about next years schedule...She currently goes on Wed,Thurs,Friday from 9-1130am...I get her home and feed her and about an hour later by say 1sih she is sleeping..works.
Wellll Next year we are looking at an afternoon program..from 1230-3pm...same amount of time but later in the day AND one extra day per week! So this makes it Tues thru Friday!. OK nobody understands how this kid works...I am going to have to re-program her! She gets up at 730-8am each morning and this works out great for morning preschool..then when she gets home she is tuckered out and ready to eat and nap.. This new day begins right around the time when she has been awake for about 4 and half hours...Lets say we BOTH will have to do some adjustments.....We will have a meeting of the minds at the end of the summer..to be continued.

Heading into Neurology tomorrow afternoon for a follow up...I dont expect any earth shattering news or anything to change...I am anxious to weigh my Madie and see if she has gained any weight...Seizures have been little biotches lately..I think we may have to adjust the diet ..we shall see how much she weighs first. Ill keep ya posted on that. We have not met with nutritionist for diet since insurance does not cover those appts..I occasionally talk to her on the phone.

Minus that pesky bug bite above her eye shes doing well knock on wood...Dad took her outside one night for some guitar playing and the bugs were insane! But overall not the parade of colds like last year when it felt like every month and half she was stuffy and sneezing up green..whew. Sucks even more that more than half the meds contain sugar! So stupid...geeze its medicine...clamp the kid down and give them their meds! not supposed to taste good! Its medicine! Am I the only one who just loves the soothing horrible taste of Robitussin? Ok enough of that rant.
In about 5 days we are headed on vacation to Outerbanks N.C...Duck to be exact. We have been twice and this is our 3rd time going...last time we went I had to dig a hole in the sand for madie to sit in since she could not sit and now she can sit on her own...
Not much else to report I guess...Its late and I have to get to bed. Madie put up quite a silly girl fight getting to bed tonight. *sigh*
Hope everyone had a good weekend and I will post before we head out..Leaving friday and breaking up the trip for the good of the child...lol...mmmm Hilton Garden Inn Pillow Top Tempur....here I come LOL

madie and her hands...

2011-05-31T09:06:00.012-04:00

There are few frequent things that Madie does with her arms and hands allllot..kinda wanted to share some of the things..maybe there is another kiddo who does the same things and we can put our mama heads together and maybe come up with anything interesting..yeah? this first one I call "Ooone Question"

this one kind consists of her pointer and thumb in mouth and other hand just comming in for more..sometimes produces impressive hand fart.

This one is the full arm twist with one hand kinda "warmin up" the thumb I have tried to twist my arms so and it kinda hurts! She is very hyper flexible due to her poor muscle tones...:( But the positions she gets into are sure pretzel like!

This one also produces impressive hand farts as well...a very common one along with the arm twisters..

then this is just cutie patootie in the chair on the front porch. She will also put her hands behind her head and sometimes rub both ears or just one ear as in this case..She will aslo put her hands behind her head when she is sleepy..she sleeps like that sometimes.
I pray that Madie will catch on to anything useful with her hands...they are such tools that you and I take advantage of and simply USE when we do things..but in my madies case that "simply USE" just does not register. Along with many other things. Its one of the many frustrating challenges that we face with madie. along with her lack of eating, her lack of physical abilities, being non verbal aside from squeals, loud screams, bbbbbbbb's, Bah bah bah, Ah Ah Ah Ah, huffy puffy noises, crying and wining, cough noises, hmmm cant think of others but you get it. Oh and Giggles. She can sure Giggle.
I have mentioned alot that we never really had a firm Diagnosis on Madie...lennox gaustat? West Syndrome? Retts? (although I have not seen her loose any skill..such as sitting or catching her fall when she topples over...but no new recent skill eaither...) Do we just label her as "Seizure Disorder" have JUST seizures done all this and made madie the way she is??Am I supposed to just sit back and think that.."oh if the seizures go away she will catch up like crazy" And just Wait? and lug around a soon to be FIVE year old?? I want sooooo badly to donate her Kimba Spring Chair to a family that needs it...that or melt the thing in a huge fire! Maybe donating would be better huh? that bad boy cost almost 5 grand!! We were blessed that insurance covered most of it and Birth to Three covered the rest! But gosh if there is a young boy or girl who is being wheeled around in some pice of crap stroller cause insurance is being jerks...well here ya go! But unfortunately my Madie still needs it and she is already getting allllmost too big for the seat that is on it. (you can interchange the seats on the wheel bases..) I dunno just throwing thoughts out there....Im probably rambling too much. just kinda lost in my thoughts and concerns this morning. I try not to think TOO hard about Madies future I just TRY to take one day at a time.
Saw a little girl at the grocery store looking at the nearly dead flowers they were selling and she had a moment of sniffing them and made a face...LOL her mom calmly told her to come on into the store to hurry up...that little moment almost made me cry. just those little exporing moments of little girls. so cute. I long for that explorative child who would drive me crazy and keep me movin.

HAd an Ok Memorial Day weekend...really wanted Hubster to take the kiddo while I whisked away to the cottage to TRY to relax but he was swamped with school work and said he would get nothing done if I left her...sigh. A part of me wanted to be super selfish and tell him that it was not my fault that he left allll this work for the BBQ weekend that I so desperately wanted to get away too...But the other part of me just sucked it up and took her.
It was really really hot. Like sit in your chair and sweat hot. Madie was a grump most of the time unless being pushed in stroller or carried. I also think she had to poop as well... which can bring on some miserable times. I finally got her to bed that night and I went to bed too I was so drained. Listening to the sounds of the others hanging out but was so tired I did not care.
But But BBQ was delicious! We had some great eats. :)
It was just Hot.
Summer is here for sure in CT. We have 19 Days till we take our trip to Outer banks too! Madie has a Neuro Follow up the week before and school ends on the 15th.
I guess that is all for now...my brain is done spitting out thoughts. Any thoughts on the hand things would be great :)

Someday my R&R will come....sigh

2011-05-28T16:56:00.002-04:00

Wanted badly to get to shore today. What a bad seizure day for my Angel today. UUUUGH! So frustrating! She slept alot of the morning away and I figured Ok..Ill just wait till later on and go. Well she has another bumping her head and being unphased by the bump and is back to sleep. I surrender. What is off today?? I reeeeally have to get her in for a height and weight check she may be gaining weight and we may have to tinker with diet.. could be.
She has not pooped in a few days AGAIN...maybe that is it. Sigh...Seriously the last time she pooped it was SO MESSY! certainly not her norm. Of course it was a preschool day so I had to clean her up the best I could with warm water and baby wash..no time for tub! And folks DONT buy wallmart brand wipes they are horrid!
I have not seen a bad seizure for about a week and half so I guess we were "due". Other than sleepy her mood has been Ok. Its been Boiling hot in CT the past few days and I had her outside yesterday just hangin out and she was not complaining.The cat has been loving life bringing home mice, moles, bunnies...and a scratched up face...When I can wrangle her inside I wash her wounds and send her on her way. Crazy Cat.
A mystery annimal has eaten my entire poppy plant as well..buds and blooms and leaves..it was so puurdy! Little Orange Flowers..morseles for the critter or the Deer. Unsure. but DOH.
Tonight I think Ill just get the kiddo in her jammys and relax at home and tomorrow I will head out to Cottage in Niantic to FINALLY relax. We will be having Memorial Day BBQ as well. Packed up car today with full intentions of leaving then felt guilty if I did not bring Madie after her bad seizures...and Hubster is super swamped with work from his classes he is taking...
Soooo Anyhoo...I went to the farm and bought a tomato plant and a hot pepper plant. If I can get just ONE of each I will so thrilled with myself! LOL I am the worse grower of things but I try and I want to be able to..:(!! I have visions of a garden with peppers and tomatoes and lettuce and yummms...but eh...think I would spend a load of money and everything would get eaten or die on me. Sooo we are takin it slow with two plants in a large pot on the deck. Wish me Luck. LOL
Hope everyone is enjoying the long weekend with the hubsters (aka kid watchers) home for the 3 days we get em!
Till Next Time
Me.

Updates. :)

2011-05-21T16:17:00.004-04:00

Today has been loooong. I was up last night with a cough and got bad sleep..Madie has been crying alot and trying to poop..Miles took her out for a little while to Target and to get her hair trimmed. I just don't have the heart to take her..lol
I tried hard to take a nap but just couldn't clear my mind enough to relax and drift off. kept thinking that they would come home just when I did. Sigh.
Miralax has not worked in helping Madie with her issues...I hate hate resorting to suppositories but today we had too..poor kid. Its been awhile since I gave it to her and still no poo..I dont get it..we can only wait.
Diet is going well. We keep chugging along. Dont know how long we will have her on it. Unsure what the plan is with that. I am really afriad that if we take her off she will be back to having bad seizures..which have been dramatically reduced..and medication is stil the same. doing what it does. ehhhh...make her sleepy? eh...
Madie seems "stuck" like not too much progression..I worry like you would not believe that she will be chair bound her whole life. She is certainly more alert and awake since we have began the diet..It HAS benefited her. But Development wise..Im ready to see MORE. :( :(
Sometimes she gets her little hands on the edge of table or on her noisy box bar and lifts her little bum off the ground..still sitting Indian style but lifting her bum up..so stinkin cute! Will she someday bring herself to a stand?? I will never know. Madie is famous for doing things on her terms.
May be time to have an EEG in the next few months er so..but no word on that and I just may have to suggest it to them..but if its MY idea it will take awhile for them to agree we all know how that rolls. I just assume if we continue to see seizures here and there what is the point?
Seizures are just as is now. No increase..here and there when we least expect it she has one..but overall a happy girl. Doing well at Preschool too! Her teachers remain smitten with her and more patient than I could ever be! We are beyond blessed with the wonderful school system in our town.
Unless she is constipated! GAH!
Well its nearly 8 and time for what we call Madies "Potion" and her meds etc.
Tomorrow plans for Post Apocalyptic Picnic at the families house. Ill make banana cake. But Oh dang no wallnuts....haha
Can I just say that as I was typing Madie was letting air from her pursed lips and wistled...LOL!
((hugs))

BBQ fun and Sweet Madie :)

2011-05-15T14:30:00.003-04:00

What can I say...madie has been a good girl.
We had a bunch of people over yesterday for a BBQ and she was just an angel! We sat out on the deck and played music and hung out grillin burgers and dogs..and my madie had NO meltdowns! It was the best gift I could have asked for yesterday as I was running back and forth to make sure all the food and beverages were out for everyone.
Its been a long 3 weeks with horrible Allergies for me..leading to dry sore throats and about 3 boxes of tissues and lots of cream on my poor nose! I kinda welcomes the little bit of rain we had yesterday that still did not get us inside..lol
I have never been more welcome of the hard rain that has blessed CT this morning..finally able to open the windows and get some fresh non pollinated air!
By the end of the BBQ I was zonked. lol But what a fun time. Madie just loved sitting outside and listening to music and getting to sit on every ones lap and play bouncing or just hangin out watching the world....:) Grumpy for a little bit but then low and behold she took a NAP! eh?? I wondered if this was the same kid!
She went to bed 30 min early as well! So tuckered out from a fun day of entertainment

Other than that things are going here. Madie had a decent week at Preschool and was tuckered out by the end of each busy morning..lol which I LOVE since I can actually have the morning off AND get a nap out of her when she gets home. Naps are becoming shorter and shorter for this kiddo...I believe that this point its probably Meds that she gives into when she is sleepy..:( But gosh unless this kid has a bad seizure nothing really knocks her out. Her wonderful teachers continue to nurture her and are by far the most patient women out there. :) They has Pirate Day at school and I laughed so hard at the picture of my madie with her eye patch on..hahah and she was not crying! probably had no clue what the dang thing was on her eyes but boy it was funny.
Big Girl bed is so wonderful..the prettiest bed! She is sleeping well in it..I hope. Lots of room for her and her pillows keep her from boinkin the wall has been working well.
Hubster is working alot of long days and that can be draining on me...usually by 4pm I am done...when I still have like 2 more hrs till he gets home and 5 hours till madie even goes to bed! But once she is out she is out by 9pm like clockwork.
Keto Diet has been going well...her constipation continues to be an issue..she was up at 630 screaming in her bed trying to poop. Eventually she was so tuckered out and finally went..then she was passed out again till about 9! whew. At least she went back to sleep and I was able to go back to sleep and wake somewhat refreshed.
As for Today well We are just taking it easy enjoying the welcomed rain that is supposed to stick around all week..so may not be so welcome by Tuesday or wed..lol
Hope everyone is having a good weekend so far and hangin in there. Shoot, I know I am. One Day at a Time.Not Turning Cartwheels Yet!

Me.

Mothers Day

2011-05-06T17:41:00.017-04:00

It has been a long time since I really acknowledged Mothers Day as a Holiday...My mother Greer Voegler has been gone a long time. When Drugs took her life...I feel as if I can be pretty open here. Each and every day I think of her in some way. Need her advice or just need her witty personality to cheer me up..or to laugh with her, to listen to music with her, to go shopping with her... All of this was taken away from me. Drugs had won. I was bitter for awhile but never blamed her for what happened to her. Drug addiction is an illness. A disease.
Mothers Day...sigh.

Miles ran over the baby warmer they had in my room when madie first made her appearance in the world and snapped this picture. All 8pounds 10oz of her! I was so thrilled that she was HUGE...LOL I just love BIG babies! Had a woman at my Job tell me "Girl, your gunna have an 8 pound baby" "I can just tell" hahah I would be happy with a hearty 7 pound er I told her. She was right.

Was still in bed with the ol Novocaine legs and snapped this one of the new Dad. The two loves of my life. I have never felt such a euphoria as I did that day. Nothing about disabilities or Seizures or feeding issues or not walking at 4 years old or Ketogenic Diets run thru my mind on this day.
Dreams. Dreams run thru my mind. Dreams of hanging out with a little mini me...A partner in Crime. A silly witty smart little girl. OUR girl. Our silly Girl. She will laugh every day. She will run and play and drive me crazy with her curiosity, she will be so smart in her world. She will explore and break things and fall on her knees and skin them...We will shop together and give each other fashion advice. We will garden together in the dirt outside and get scared of bugs together....yeah we were going to be a team to be reckoned with. Everything I grew up doing and then some! I was scared as hell but I was ready.
I would not change the way things have gone for anything. I would not wish madie any different with her sweet smiles and funny noises and loveys..it Madie. Just Simple Madie.

My Mother in the good days. She was so pretty. I miss her so much. Cant go back in time to make things different...I cant go into the story of what happened that night of her death...it was a mystery to me for a long time..The Addict that came with the drugs that my mother died from is dead in his grave now so there really isnt anyone to be mad at..Time has healed me. Time has not brought back my mother. if I saw her again I probably would crumble into her arms and cry Mommy...for real. She was so stinking crazy..one of the cool hip moms that just embarrassed the crap out of you whenever she could...lol I have acquired alot of her and find myself being like her ALOT. sigh. Sometimes hard to believe I myself have the responsibility of a small child now and that I met and married my husband.. I am truly blessed. Alot of tragic things have happened to me..I felt angry at the world for giving me such a gorgeous child and giving her seizures. It just was not fair. WHY do I get that? Some say I am so strong to have gone thru what i have gone thru..sometimes I feel like the weakest person alive! and God knew that when he choose me for Madie. he knew I was going to be mad at him...he knew.. But he knew that Miles and I were the best she can have. That this sweet little girl needed love.
(whew, cue water works)
Happy Mothers Day.

Summery Days.

2011-05-01T15:58:00.004-04:00

Well here we are. A Gorgeous Day in CT USA today. My Allergies have limited my outside time right now I am comming and going..lol My Nose is so chapped..I love the fresh air and the cool nights but I may go AC soon.
Just a lazy day on the homefront today. Spring Break for Madie is FINALLY over and back to preschool last week. The very first day back she has a big seizure at school. UGH! So off I went to pick her up. At least they diddnt call the EMT guys. She has been very consipated and not eating as much as I need her to eat...could be the issue. WHO knows.
Its been a good few days. Madie has been in a good mood for the most part and even survived an Easter at grandmas house. We got their early and ate early so we were home before nightime meds..which worked out well since Madie was getting SO TIRED. But it was a busy day. I made a bananna nut cake with creamcheese frosting that was YUM...the middle fell out after I baked it soooo I made a nice hole in the middle making it look like a bunt cake..LOL It was still yummy and heck its "only family" we eat anything! :) Grandma made a Deeelicious Ham and some Mashed Potatoes, Rolls, I also brought a salad and We also had chocolate cake and cookies..WHEW.. Start my Diet tomorrow...LOL
Madie loved piggy backs from grandpa too! Oh how she loves being up high and seeing the world. Gosh, if only she would get on her feet to explore..sigh. I keep strong hope for that day..
Hope everyone had a great Easter :) That is about it in a nutshell.
OMG I have to tell...lol
My Cat brought in a live mouse the other day too...was unsure if it had been in house a day or two...found it under the baseboard heating...then I moved the shelves from the wall and there were droppings...ACK. So the thing scurried away from me..and I have no idea where it went. ugh. Left the doors open for a little while and have not seen it. sso grosss! May set a trap in the basement incase it went there..too much stuff to hunt thru to actually look for it down there! I am always shining my flash light in the corners...lol
Ohh the Joys.
Not much really going on...I think I have mentioned that Insurance has finally agreed to pay 80 percent of the cost of madies Ketocal..AT LAST!
AND madies big girl bed is still not here YET I am so stoked to see this bed! Have her sleep in a bed where she doesnt get stuck in the corners anymore..LOL
Hope everyone is well..I gotta go get the stinky kid in the tub tub now. :)

Oh and are we done with the Royal Wedding already?? Eat a Burger Katherine!!
(mmmmm Burgers.....)

:) Me.

Big Girl Beds and Answered Prayers...

2011-04-23T11:52:00.004-04:00

Just like that yesterday we went to the bedstore and got madie the prettiest little daybed..its white so it matches her other furniture in her room..and has 3 sides on it..(ok we all know what daybeds are..duh) But its perfect! Hopefully when all said and done and set up and after we buy a detatchable railing for the open side it will work out well :)! My Big Girl is WAY too squirmy and rolly in her crib..
Yeah well it cost alot but we also got a mattress too and a mattress protector as well..which will be worth it.
AND Just like that Insurance has decided that once we reach our deductable as far as paying for Ketocal they will soon cover 80% of the cost!!(we will most likely have one more month out of pocket to pay full) Ok still a hundread some-thing a month but not 600-something! AMEN!! I am still in shock and really wont sink in till I am ready to pick up the lastest stash and its not 37 bucks a can! I cannot count the months it has taken to get this achieved. With enough hope and pushing and pushing anything can be done! I am firm believer in that now..

ANOTHER thing...well diet related..We have just aquired a scale to weigh her ketocal so we can give her the propper 40grams that the Nutritionist says we should give. (plus 2oz of Apple Jucie and 6oz of water) Well before that I was kinda eyeballin it and using my measuring cups and spoons..making half a cup minus one tbsp of Ketocal..
Well since the scale we have seen TWO big seizures! 2! uuuugh in one week! Well out of curiosity I weighed what I was giving her when I eyeballed it..THREE MORE GRAMS than what they asked us to give...
Well on that ammount I feel she was going just fine..her blood work (which is almost done) so far has come back looking great hopefully there will be some wiggle room that we can adjust.. Ill keep ya posted on that!
My guess its adjustments of apple jucie and ketocal comming soon.. OH and recived and offer of some Ketocal as well...I am terribly sorry we cannot accept madie is on the 4.1 ratio...DOH.

Other than that..well today is a gloomy rainy day. AND the Funeral of a dear friend of my mother in laws who passed suddenly on Tuesday..I have met her alot and she is very dear. Sad Sad Sad...Not in a mood for a funeral but feel also that its importaint to be there and to pay respects. We will only stay an hour or so and maybe go get a quick dinner someplace in town...
Hope everyone has a wonderfull Easter and All the kiddos are doing well and happy.
Well I guess its time to get movin...sigh..feed the kiddo. She has been in a mood for sure...REALLY time to get back to preschool routine ASAP! (not till Wed!)
((hugs))

Insurance Whoahs...

2011-04-14T10:04:00.007-04:00

Where can I begin.
We will get a few cans from Hartford tomorrow after we get madies blood work and height and weight checked..we will be recieving a 6 pack of Ketocal in the mail via UPS someday...Other than that this month looks like another out of pocket month for Ketocal.In case you wonder...well that is about 600 a month...PER MONTH. about 40 a can...if ya round it off..
Do any of these big whigs in the insurance companys have childrean with intraceable epilepsy? Lennox Gastaut Syndrome? Global Developmental Delays? I wonder.
The agents themselves well we cant go screamin at them...they have been nothing but kind and telling me they wished they could do something for me...its just the policies they follow. No sense in beating up poor Kathy from Anthem...
I try to understand that these companys are just following their policies and rules etc etc...
As a mom I am wanting to scream THIS IS MY CHILD!! MY CHILD! This Diet of 600 dollars a month can help her SO MUCH! HAS helped her! 4 years of horrible seizures and medications...specialists, therapies, unknowns...No reasons found WHY my child has her seizures..lets slap on a Fancy name for it and call it Lennox Gastaut. Then when she gets older we will scan her brain again and again and maybe throw in an Autism too!
My Madie angel has been just that...An Angel. Sweet happy (ok unless hungry, Tired or hurt or trying to poop...lol) Just overall happy..interactive as she holds onto your head giving her loveys and giggles..
I have thousands of pictures of her and over the years you can see it when she has bad days..the emptiness in her eyes and the circles under them.
I dont know how long Madie can be on this diet..I would like to hope soon we can start to introduce real food to her for the first time in over a year...maybe that will make it easier on the wallet.
To drift off ...we will actually be trying some unsweetened apple sauce in her mix..please keep some good encouragement for ME as I try once again to get my Madie to eat....

Although I have never tried this while she is on her Keto...may be different..
She is so much NOT like those old pictures of a "lost" little girl storing up giggles and loveys while seizures just nail her down..

This was from 2008...We had only been in our house a few months..I think she was on Zonegran and Topamax?? Unsure...gosh there have been so many..
She is getting bigger, HEAVIER, putting meat on her lil bones and when we get her bloodwork tomorrow we will determind if she is getting all the vitamins and minerals she needs as well..
She on ONE medication..still her Depakote Sprinkles. 2 vitamins...Her Carnatine and her half Scooby Doo (sugar free!) Seizures well...she had one large one on MOnday this week....I blamed our medicine mishap...I made a mess squirting it in her mouth and got it on her shirt and chin...sigh...OR was it low Ketones???
Hmmmm....
I hope I am not rambling too much...I am an ADDer and my brain just wants to spit out my thoughts as fast as they come...without forgetting! LOL

And Last Spring...May 2010
So I guess in a nutshell...We are going hell and high water to make this diet happen month by month...making sure we save enough each month or whatever to make it happen. Its been amazing...and to have to take her off the diet because its so expensive will break me in two. I cannot loose the madie that has emerged from this. Please wish me luck with trying some food with her...I have tried in the past with horrible luck..maybe just maybe this time will be better..
OH OH in the market for a new big girl bed for my big girl too!! I have good faith we will find her princess bed with lots of railings and pretty new bedding :) SO excited for that! :)On back burner for now...as we wait for ANOTHER appeal with insurance...sigh.
Have a great weekend!
me.

A Diet of certain miracles......

2011-04-08T18:24:00.006-04:00

Madison LOVES tub tub time! Some cute shots of her in her tub a few days ago :)
Well I have been hesitating to blog only cause I feel like If I brag about the great couple weeks madie has had they will suddenly come to a screeching hault with bad seizures and bad moods and sleepiness and constipation and uhhhh what else..?
Nothing but great reports from school..giving teachers hugs and her loveys and giggles and great interactions with her therapists and it just warms my heart..Her teacher will come out with her at pickup time and just be so happy to tell me that they played and madie laughed and laughed. My Big Girl...you will get there..

This Diet...oh the blessed Ketogenic Diet. If any of you seizure parents have ready about this Diet its sometimes hard to understand.... We worked out one kink and lessened the amount of water to the same amount of Ketocal and Apple Juice and she gets alllmot the whole bottle down leaving maybe an ounce in there. Which is better than before leaving at least 3 oz and not getting enough effect from it.
This Diet....I can only watch in disbelief. Is this working?? A DIET? Food? Fatty Greasy bottles? After NINE medications?? All those terrible drugs....STEROID injections in her little 11 month old thigh...

I turn to her at each weird noise she makes wondering if its a seizure hitting her. I hold my breath each time the phone rings when she is at school hoping its not the call to come get her after a large seizure...The Friday before last was her last big seizure at home after school...and the Thursday before that was the last big seizure at school where they AGAIN called the ambulance..sigh. Soooo two "big" seizures in 3 weeks....(I think that's right)She still has small ones when she sleeps as I even saw yesterday while she was napping on her blanket downstairs..
BUT BUT wow..she has been doing good!!
I hesitate to even brag...we allll know how that goes! Then BAM BAM BAM seizure after seizure hitting them hard. Breaking our hearts into two..
I have learned thru all this to take ONE day at a time. Just One. Enjoy each good day and savor the giggles and the loveys. Hoping some day just some day that she will be able to walk and play and be more or less seizure free. Med free? Well I think she would have to have alot of clean EEG's for that to happen but like I say one day at a time. I already feel a load on my plate but I also have to get this kiddo eating FOOD...real food. maybe a meal a day...or a few bites at a time..I just have no idea how to begin. (well I think I just answered that huh? lol) Its tough right now cause its SO important for her to get the right amount of food...no messing around...which is why I have still just been doing bottles. *sigh*
NOt really much else to report..Spring is trying to show itself in CT..my flowers are slowly coming thru the ground and its getting to that time to mulch the garden..I am not very successfully trying to grow peppers and tomatoes but having lack of sunny places that last all day is tricky...lol Hoping to get some cutie spring pictures of Madie soon too..get those pigtails back!
(((hugs mamas)))

The Scoop.

2011-04-02T11:31:00.006-04:00

Feel like I have not posted in awhile..eh..no reason.
Just tired or too lazy to get on computer and collect thoughts.
The KetoCal Battle continues in CT USA...Insurance is holding down strong at no coverage. We are stocked for a month now after we paid nearly 600 dollars out of pocket on the credit card...but what about Next Month?? We did sent in a claim form to Anthem with hopes that maybe we will recive something back and we can just buy next months supply with that...sigh. If that is what we have to do then that is what we do.
Madison had a great week at Preschool too! ALL THE HAPPY REPORTS! She had one seizure friday at home that put a damper on her day but after her nap she was really happy again..Guess I cant complain. They have been doing cool exercises with her and they have an Ipad with cool touch screen cause and effect games on it. Dang I wish they werent 600 bucks could be cool to have :) She has been doing great in her stander too..sometimes 45 min! I can still remember the 1st time she was in a stander and how she screamed like she was being tourtured! I never had the heart to put her in it!
Madie-San you are a hungry girl. Gobbles her Ketocal..we lowered the water by an ounce in each and that seems to be helping her at least get more keto in her tum tum. Consipation has always been an issue but Miralax has also become part of her regiment...poor kiddo cries when she poos...hates when you change her after too when her poor hiney is so sore. :(
I want to try some real foods with her..I have a great food processor and lots of chicken and free foods I can mush for her to try. I have no idea how I can incoorporate real foods into her diet and actually be sucessfull at it. And yeah, Insurance was not about to cover Feeding Therapy once a week...sigh.
A gorgeous sunny day today got a couple windows open as it was getting hot in the house. I am still anxious to get my gardening on. SO relaxing...I have uncovered bugs I have never seen before creeping in my yard..lol ran once like one was chasing me!!
Hope everyone is well and hangin in there. I know I am. Why did a sesame seed just fall out of my hair?

A LoNg WeEk

2011-03-25T09:34:00.004-04:00

I am without words for this terrible no good very bad week ALONE without the Hubster, Exhausted, Spent, Kapoot, Anxiety has been bad, my eating habbits have been lazy man foods of ordering out or just eating plain ol spaghetti for dinner, lunch breakfast...sigh. House is dusty and dust bunnies are showing there furry faces in the corners..Laundry is still not done...
Well the worse drama this week has been two things...The Seizure madie had at school yesterday and the ambulance that the school called...(which I signed off on we did not need it) and the battle with Ketocal and the 500+ Dollars I charged on the credit card that we will already be paying off for 50+ years...after we come to find after ordering 3 cases..18 cans..that the pharmacist at target rang it up as the price per can per case!! 37 bucks for 6 cans I was thinking we had actually had some success with insurance! SO come Tuesday when we were nearly out I go to Target to pickl up the cases that we ordered...100 bucks in hand ready to go..
They kinda looked at me and asked if I was sure that I wanted all this...UHHH yeah I said. SO she beagn to tell me that its 37 per can!! Well I freakin know the price but that is not what we pay..SO I thought.
SO I am frantically calling Miles who is not picking up his phone I am sweating and my heart is racing.. I shell out 70 bucks and get 2 cans for now and leave.

Pharmacy calls me that night and tells me that the ketocal needs to go thru Express Scrips which is part of Anthem...asks if I have a card or ID for it..
UM...before I bust a vein in my head I tell her CALMLY that I have never heard of this Express Scripts (which I later find out does exist but we dont have it. we have shitty CVS caremark)
SO on to phone tag with Neurology. They FINALLY call me back and tell me to call Anthem...IS ALL THIS MY JOB TO DO??? Its like "We tried once and they denied so now its up to you if you want the possibly life changing diet for your daughter" Anthem tells me that I need a letter of "medical necessity" which we have done 60 times and I need a claim form so maybe I can reimbursed for the ketocal I have already purchased out of pocket, AND that I need to ask the doctor what the CODE is that they billed with and maybe its the wrong one...
Well this was Tueday and the two cans ran out quick and I heard ZERO back from Neuro and from Anthem and from anyone... Went to Target yesterday (thurs) and took out that shiney silver mastercard and charged over 500 dollars for ketocal because I will go to hell and back to get it for her. And I wait for this claim form with a "maybe its covered" hope..and called Nuero again and the nurse dealing with Madie was OFF...she may come in today (fri) for a couple hours but if you dont hear from her then (today) you will certainly hear from her Mon.
SO in the meantime it really left me not much of of choice but to pay out of pocket.
OH and dont forget the suggestion of Anthem to try a medical supply place "in network" to have keto delivered.... Im not looking for a place to have it delivered im looking for COVERAGE...someone to PAY for ketocal...we have sent all the crap and reasons why madie needs the stuff...sigh.
I felt like I was repeating myself over and over and when she told me to go thru Caremark again I was done. I told her thank you and hung up.
THEN yesterday I get a call from School that madie had a seizure and I had to come get her. Ambulance was called. I just lost it. Tears came and couldn't stop. I wanted to go into her school and just whisk her up and get her home in her jammys and comfy. I had to stay and wait for ambulance and sign off on it refusing it. Then I had to listen to the nurse tell me how the seizure looked and how she was making breathy noises and her eyes were rolling etc etc....
Please do tell... Ive Never seen one before...
When I got her home she actually ate a bottle and then took a two hour nap. I went into her room once in awhile to see if she was just quietly awake and nope. OUT. Poor Angel.
The Evening was good though she was happy and I gave her a nice tub tub and changed her jammys and we just hung out..watched a little Idol and The Office and went to bed..sigh.
Hubster comes home today.
My Wonderful Cousin in Law comes to town with madies two Cousins Amelia and her brother Jack I can hardly wait to have some mama time with my Annie Bannany. The kiddo is ALLL yours Miles! LOL
Thanks for Listening Folks.

Sorry bout that one. :)

Thankfull for Madie.

2011-03-14T19:53:00.009-04:00

October 20th 2006. You threw up on me that first feeding and when you pooped "tomato seeds" I paniced.....lol Ohhhhh How times have changed...

Feb 2007...how compleatly Captivated I was with my beautyfull baby girl with no idea what the future held for us.
Hello World.
Went to get MY bloodwork done on Sat..remind me NOT to go to the lab on Sat.. I waited about 45 min..
There was a young boy in the waiting room with his parents and he was very disabled..smiled a little at his toy that his mom gave him and smiled when she kissed his little cheek..I was touched by this little soul as he was in a chair and was not mobile. His Chair was really...a pice of junk. I thought of my Madie and her fancy Otto Bock chair that she uses for school and how blessed we were to get it and that Birth to Three paid for 1000 dollars twards the cost! AND insurance paid for the rest! This bad boy was almost 5000 dollars! AND to top it off the kids name was Lorenzo...GOD>..ever see Lorenzos Oil?? TEAR JERKER!
I wanted to say something to the parents but kept quiet...dunno. Maybe they have shotty insurance or none at all..I wanted to say "My madie wont need hers next year since she will be in Kindergarten..Id LOVE to give you her Otto Bock Chair...But I cant say that.
We were going to meet with the Nutritionist tomorrow in Hartford but last time we went we got a bill for almost 400 dollars pretty much confirming that insurance will not cover the appointments..unless madie is Diabetic.
Breaks me into two pretty good pieces that it has taken so long for Insurance to cover madies possibly life changing diet shakes..(we are now at about 6.50 a can which is affordable) and now they will not cover her appointments so we can monitor her on the diet..Not Giving up yet...
We still have to go to Hartford to get her bloodwork done and a weigh in and height check...make sure she is gaining weight. and lookin good..etc etc. Wish we could just re-schedule and do it all in one visit or just at least do the blood work at the local lab...Bugger.
Oh My Madie love. The things we fight for you. How much I would love to give some sweet deserving soul your adaptive stroller and get you off your meds and have you seizure free. Oh how much do I want that for you.

On the Lighter side...Hubster and I got out on Sunday night to a small local(kinda historical) theater to see Bill Engvall do comedy show.. I have not laughed so hard in a long time.it was so fun. There was even some crazy lady who got kicked out by the security it was hilarious as she screamed for her glasses that supposedly she was wearing on her face the whole time..Drunk? who knows!! Bill Engvall played it well as she was being led out...errr dragged out..Hilarious! We went to a restaurant after for some appetizers while all the traffic left the town it was so nice. Sad to get back to the real world knowing it was back to the grind come Monday..lol
Kinda did not want the night to end. Sad.
When you can get Adult time out and forget the stress even for a short time.

Well the time change has thrown madie off terribly...going to bed an hour later..(like 9 is not late enough)...and waking an hour later...at 9am. Tomorrow I will have to wake her up for school which is at 9am..sigh. just hope that goes well. One thing I have learned as a mom when the kid wants to sleep...LET them sleep. take advantage of the time you can collect your thoughts or read a chapter of the book that is collecting dust on the shelf.
Well I can hear her making noises in her bed now so I guess that is my "Q" to go get her. I am thankfull for you Madie. Mommy Loves you with all her being. Your just tricky to understand sometimes...I wish you would give me a glimse of what is to come....tricky beautyfull Girl.

funny pictures

2011-03-11T11:08:00.004-05:00

Madison does the most impressive handfarts...LMBO.

You think shes sleeping..no sir shes sitting..

the other morning I go in her room and look at this hair!

I see you mom!

rainy days..

2011-03-06T14:37:00.005-05:00

Well today in CT USA..things sure are rainy. Slushy snow is melting revealing our mudslicked lawn..I am craving warm weather soooo badly! Sitting on the couch while little Madie sits on her blanket playing with her hands and humming noises to herself. What a beautfull little girl. At the same time as I admire how stinkin pretty she is I am also filled with concern and sadness twards her. I just want her to get there. Well ok now I know she will be in special programs and certainly has her issues..but get there. KNOW...understand more...explore..albeit horrendous sensory issues..lol I have dreams for her is all. I worry so much about her...she is for the most part happy today we survived thru one meltdown due to who knows what but she since recovered from that. (we usually let her cool off in her bed for about 10-20 minutes) I wonder alot if her Keto gives her a tummy ache..poor kid doesnt poo much.
Anyhooo aside from that not much else. hoping and hoping that this week stays good seizure wise...have to give a call to nuerologist and give him updates... madie has been eating really well..still yet to eat a whole bottle always leaving about 2-3 ounces in there...very frustraiting...the stuff is so stinkin thick! ick.She eats it though! We are compleatly Pediasure Free! Gave our big stash to a group called Gifts of Love that help needy families..:) I do have TWO unopended cans of Duocal if ANYONE wants em! Ill ship em! Or I can give it to the hospital to the G.I folks..:)

Spring time and summer time cannot come soon enough..I am so bummed out with these grey rainy or snowy cold days..I long for fresh air to sit outside on the green grass with Madie and snap cutie pictures of her in her long pigtails and new spring outfits...*sigh.
Today has been a pretty lazy day for sure. Went to the bookstore with Miles and it was just so rainy I was not willing to walk thru to other stores. less than half of them have awnings..
This week nothing planned...next weekend Hubster and I will go see Bill Engvall comedy show on Sunday getting out for a date night. (a present for valentines day)and that is about as far ahead as I can go...lol
Hangin in there I suppose..no earth shattering news..Maybe Dinner at Grandmas tonight but Miles has alot of school work to do and I gotta get to the grocery store to at least get some jucie and small items..we are LOW.
May get the gang over for St Patricks day for some Cornbeef and Cabbage too..we shall see..
Hang in there and have a great weekend. :)
Me.

Lifes little Rambles.

2011-02-26T19:05:00.002-05:00

Madie vanNoordennen and the Terrible no good very bad days...:(
Big Seizure this AM...ugh. Poor Angel. She was OK somewhat after so we took a trip to the bank and to Walmart where we got some odds and ends and a cutie new blankee and a st patricks T-shirt..Oh and mom needed socks..lol She was happy as Dad pushed her in her stroller thru the store..they have a Subway in the Walmart and it makes you so hungry as you par-roose the asiles..lol It was very cold today but we still ventured out. Just so stinkin sick of being inside all day! AHH! We also went to Best Buy and poked around for giggles..they had this super cool Bose System with teeny little speaker that filled the store with music. Granted it was Toni Braxton but it sounded so good.. Only left with a CD..but it was good time out :)With me Dancing in the asiles emabrassing Miles...LOL
Madie has been ok today despite her seizure this AM...she was VERY constipated this week...has spent the majority of the day trying to poo..Poor kid. But tonight the Poo Gods came and while I was out picking up some Thai Food Hubster said she had her first Adult poo...LOL Sadly I wish I was there to see that!! Poor kid! Yes, Miralax every morning with her bottle but I am loosing faith in that stuff.. and I am fearing if I give her too too much we will have liquid diapers...Yeah Gross.. But its what is goin on. You know you wanna know. :)
Hubster has a cool rental SUV for work this week and I have enjoyed driving it..although a tad too big but nice stereo.. I have my heart set on a new CRV..trade the ol Civic in...tee hee. I just have no room for madies stuff..huge adaptive stroller takes up the whole trunk and is just too dang heavy to be lugging in and out of the car so I just leave it in the trunk.(what if someone stole my car??)

ANYHOOOOO Tonight we are just realxing.. no real news going on. Another freezing cold weekend and some snow expected next week...where is spring??
I am going to Dentist next month to get two fillings and possibly make an appointmet to get a crown on a 13 year old filling...other than that...pretty low key. Well I guess I better get the dryer running and madie fed and medicated.
(((hugs mamas)))
Me.

Gas of the Brain.

2011-02-20T13:50:00.008-05:00

Well we made it thru a bad day yesterday...Madie had two bad seizures...dunno. whew. Just glad she is in a better mood tonight and over that terrible day. She is doing great eating her ketocal lately too...we had to UP the Miralax and sure enough the past few days she has been pooping. WHEW. Amazing how much better her mood is when she simply GOES...haha. I am going to see if there is anything else I can add to her Ketocal instead of Apple Juice as they (doctors) suggested. Apple Juice has not been very stomach friendly. She has been back to her usual self today making her noises and giggling and rolling her tongue really fast and making very impressive hand farts...LOL
Been taking it easy today..we had a little snow yesterday evening giving us maybe 2-3 inches which was not to hard to shovel. I am so done with winter its been terrible!
Our Basement was checked out by the insurance guy and now we wait with fans running to dry the wall. We sure learned our lesson that we need to really get on the ball with snow removal from the roof and deck.

Well today is another day. That bad seizure day was Sunday...its Tuesday now..sigh.
I am frustrated at winter right now. I long for the warm breezes and green grass and BBQ's and reading my books on the deck...*sigh...
My Brain is scrambled eggs when it comes to entertaining Madie today. She is sitting on her blanket making her usual happy noises and eating her toys etc etc..but I feel like I should be down on the floor always interacting with her..I mean this is my child! Am I being neglectful when I retreat to the laptop to play a word find game or type an e-mail or blog?? I would give anything to just sit with Madie and color or do some finger paints or go play in the snow..or toss a ball or ANYTHING. :(
Yeah. Feeling Bummed out in my world of Developmentally Delayed Children..:( How oh How can such a perfect little girl have so many issues..Ok Issues is a bad term to use..but you get me right?
I guess the winter blues are bringing me into the mourning of the quote "normal" child..which comes and goes..But I do have a pretty good acceptance that my child has seizures and that she is delayed in MANY things..its just frustrating. Will she progress at all?? Is she going to be a 12 year old in diapers? is she going to be in her chair when she gets older or are we going to shop for some sweet little New Balance sneakers? (like her mamas) No one knows. And I HATE that. I am a list maker. A planner. I like to know what to expect. I like to have things all set before entertaining...like if we have a BBQ I am making all the salads the day before and getting all the things set up on the counter ready as it can be so I have minimal kitchen time when friends arrive. I make lists all the time. Sadly I forget to bring my lists half the time...lol. When we go on trips big ones like a vacation (sigh..what are those) I am making list upon list of what to bring. Scary yes. But eases my anxiety...lol
SO in a nutshell I TRY not to think TOO TOO hard about Madies future and take one day at a time. When one day turns into a week and a month and a year..and she is yet to do some things that I so hoped for months ago...I worry. I freak out. I mean what if by some crazy twist of fate I were to get preggo again? OMG I would have a nervous breakdown caring for two children. And whos to say that that new child wouldn't be disabled as well?? Ok no more talk about that!
I have been doing well with the whole no wine drinking as well...I had a couple glasses on Sunday at dinner but that for me is good. Yeah yeah yeah... I know. lol This mama needed it. Food was great and conversations were full of laughs... Its what I needed. Maybe just the night out. (well I went to Miles' cousins house...lol) BUt anyhooooo Yeah so a couple glasses of wine...so sue me.
Miles stayed home with Madie that night who was in the mist of meltdown number 60..and I thank him greatly for that. SOMEDAY we will both get out together have a glass of wine and have US time...not worrying about Madie and her meds etc etc...YEAH...
I long to be back on that beach in Mexico..:) Such simple times.
Well I guess I am done rambling. Another week of Preschool tomorrow and hoping that madie has a better week than last.
Hope everyone is well and hangin in there. heck I know I am.
Till next time.

thank you so much Winter....sigh.

2011-02-16T19:57:00.005-05:00

This is the lovely black mold under the insulation in our basement. Snow and Ice has melted thru the walls from the ice covered deck. Yes, this sucks.
We have to use a pick axe to remove the ice from the deck its that thick. Temps have been steady at....freezing!! No thaw. Till friday (today) when its supposed to be 54...wtf? (has melted ALOT today and Miles was up on ladder hacking gutters so they can flow..
Right now some crazy thunder storms are comming thru and bringing in that cold air once again for tomorrow.
I hate hate hate this winter...Im ready to see green..ready to play in garden..sigh.
had a carpenter guy come with a 2700 dollar estimate
Madie has been a royal grump today...not a great week at school or a good nap at home..or a poop since MON....how much is too much Miralax? Im so tired this evening..its 8 and I have yet to eat dinner..have zero motivation to cook it eaither..sigh. Oh I take that back...shes trying to push one out now...poor kid.
Insurance Guy is comming tomorrow to asses the damage in the basement. No real plans for Sat..just hangin out. Sunday we will have dinner with Miles Cousin and his Girlfriend as a nice night out. :)
Well I guess that is all my rambling for today. Not much to share really. Except a little mold picture. FUN.And lots of constipation...where does her food go?

Hope everyone is well and having a good weekend. :)
Oh and Madies Seizures have been OK...not the best but better. Cmon Ketosis!
Ok...its medicine time and BED time...This mama is tired!
((hugs))

Constipation and Sobriety...YUP all in one! HA

2011-02-10T17:48:00.004-05:00

I am thinking today how much us "seizure moms" have in common. Our kids are just not able to nip the seizures in the butt. One goes. a new type arises. They disapear for a short time...oh no they are back with avengence. THIS has been our world!!

I am broken hearted. Its the most helpless feeling in the world to watch your child have a seizure and you can do nothing to stop them. AND the Doctors who know so much can't eaither!! SO who do you go to for help? We turn to various drugs and diets and surgeries and support groups or other moms etc etc..You look for support. Nice genuine people..people who dont judge you or your child to tell you that it will be Ok. "DOnt worry, Madie will get there" "Dont worry she will stand someday" "someday the seizures will be gone" "hang in there" "Your doing great mama" And I dont know about you but I will take any sort of encouragement and good thoughts and hugs and love I can get!!It warms my heart the unconditional love for my Madie. Just warms me.
Deep in my heart I have to believe that Madie will make some Milestones someday...that she will eat her real foods someday..that she wont be in preschool till she is 12! If I don't...well screw that.
Its a darn good thing shes so cute!
She is getting so big. SO TALL! Almost time for a big girl bed if she keeps getting herself stuck in the corners of her crib! lol.Then its off to shop for rails to keep her IN the bed without sliding under or going over! HA
BUt that is a little ways away.
In other news..
Almost 3 Weeks without a glass of wine or a sip of beer. 3 #^*ing Weeks! I am almost afraid to just have "one" fearing it will lead me back into the bad cycle of things. Staying strong and resisting temptation even on bad days. Anxiety has felt better for sure...even ventured out to a couple of stores by myself with minimal panic. Felt Good. Each Day is hard. But ya know about 6 years ago I quit smoking and never looked back....ya never know.
I wont go into the whole History of me and my drinking I really dont feel like I can tell that story quite yet. And what made me decide to "take a break" well..that is left unsaid. Sorry Folks. I really never considered it a problem till reciently....when things get stressfull I like to unwind. I dunno...just seemed like a little too much and decided to just chill.
Dont worry Im not in trouble with the law! (lol)
Still not able to say Im quitting all together so Ill say a break for now. Sounds good to me. Maybe a guilty glass on Valentines Day..(nah!)
Madie has been OK. still the same little booger...not too too many jerks and twitches but I stay patient with those..and that one big one per week persists...Keto is going well..I think in some odd way it helps. I can only be certain when we get her on it longer..
She had her first full week of preschool this week in about a month and has been pretty sleepy when she gets home..gotta get her back into her routine..sick beyond sick of these below zero temps and snow!
OH Aaaand...
We are off any Pediasure now and all is going..its been bout 2 weeks. The worse part is the constipation! 4 days and lots and lots of Miralax later...nothing. then I bought "little tummies" that looks like brown tar...well low and behold today she poops!! Size of a tennis ball I tell ya! whew! no struggle...the s*it just came. I sigh relief...Sadly she will need daily stool softener with this whole dang thing..
When she is blocked up she will not eat alot which is not going to work when she needs x-ammounts of ketocal...*sigh...sooooo We will add stool softener to her regiment.

Valentines Day is soon..no plans..kinda get consumed in other crap to even think about "Adult Plans" probably exchange cards. We are all getting over colds as well soooo we shall see..I never know what hubster will do. :) I am usually smitten with flowers and a dinner out somewhere. :)
maybe we can get a sitter and go to dinner...madie is always a pain in resturants...although once she quieted down when I gave her the strawberry Sauce from our mexican churros..lol
Have a great weekend folks.

Happy Girl! :)

2011-02-03T16:56:00.004-05:00

What a Great Day! madie you have been a joy for mama today. just a few pictures of the big girl today playing at her Noisy Box that she loves! hee hee. hard to believe she is 4. Although not the average 4 year old by no means...but WOW she is so big! She was so bright eyed and happy today and only napped for about 40 min! I think I may soon be saying bye to the afternoon naps...:(

Great Day at Preschool too! They had to adjust her stander since she is getting so tall! It was wonderfull to get back into the old routine again. Its been a brutal winter this January...stinks. We have no where elese to put the snow. I think on Sat there will be a mixed storm of ice and rain and snow...YIPPIE!!
Oh How I long for the green grass and sitting outside and summer BBQs..and cutie pictures of madie outside on the green..heading out to the inlaws beach house and sitting under my favorite shade tree..:( Too Gray and White for me...Need some color! Very much having winter blues and cabin fever here.

Diet is going well. We are at 4 keto bottles a day and almost completely Pediasure Free..We have been moving slowly...working on it...Miles (Hubster) left a comment on my last post that kinda put it in perspective. Dont worry kids we are getting there!! Ohhh we are! :D
He Wrote:
Yeah, we had a meeting with the nutritionist... the problem we have is that nobody seems to understand that our little Madie doesn't eat as much as a typical 4-year old does. We're technically supposed to feed her 5 10-oz bottles a day... having said that, she has NEVER eaten that much food a day, even before this diet started, so we struggle a bit. Per the docs, she now gets 8 ounces of ketocal with 2 ounces of pediasure to give her her daily carbs (we're actually on a modified keto diet which is a little less strict and allows for some carbs). I think she's slowly getting used to is and eating a little more each few days... we'll see!!!
Soon she will be free of pediasure and we will begin to add Apple Juice...Apple Jucie can give her tummy aches too so we add it slowly and sometimes sshe needs some miralax as she is very consipated as well.. Ill Keep everyone posted on our progress. :)

Well other than bad snow and A happy girl Mama is running out of steam today with the head cold that madie has last week...Was feeling a little feverish but I think that passed..all I found was Advil from 1999....so hubby is getting some more on his way home tonight...(and no did not take the 1999 Advil...lol) The meare fact that she was happy today has SO gotten me thru my day ALOT easier! AND she has eaten very well today too...mamas big girl xoxox
Hope everyone has a great weekend and stays warm.After this winter we are almost considering a snow blower!!

((hugs))

hello world

2011-02-01T11:36:00.003-05:00

Well MORE snow falls in Small Town Canton today..with our itty bitty front yard and small two car driveway there is no where to put all this snow! and NONE of it is melting! Big Mixed Storm headed our way Wed! Ahhhh!!

Thank you all so much for your words of encouragement to help me and my love affair with the ol Pino... I am going to be honest here and say it downright sucks. I am really anxious and trying hard on those bad days to just keep it together and not turn to my glass for my sourse of relaxation.WHICH SUCKS!! Really cant say that little over a week into this if I am going to compleatly QUIT all together but...Break is needed...I weighed myself and I am 3 pounds lighter!! Ok 3 whole pounds probably water...BUT DANG!(or that I just got over my special friend...LOL) That is my other motivation..all those empty calories! Hoping to loose a little poundage. We shall see... I am tired. Really Tired. Like I am catching up on sleep I have been unable to get or have had so much bad sleep... have been unable to nap since madie has no desire to nap more than 45 min...
Im other news...
The day before yesterday madie had a bad bad seizure day..full of jerks and twitches and one big grand tonic...I was so heartbroken. The past couple days have been ok...we are workin workin on getting as much ketocal down her lil hatch as we can...and if its ahalf bottle then we try sooner than later to feed her again. All we can do. Waiting for her Bloodwork to come back too..5 stinkin tubes better tell us something! Well on the Diet they need to check alot and her Depakote levels too.
This mama also has to go in to get her Cholesterol checked too...at one point when I was super heavy I was up to 250! I think last check was 220...ugh. Soooo I stuff myself with veggie nuggets and less sodium and fats and get the ol blood work checked. I am certain that less drinking will help those numbers too....*sigh.

Hangin out today making homemade Oatmeal choco chip cookies and going back and forth to computer and making cookies...Oh and maybe paying attention to that child...LOL
The snow continues to fall...think about 4 hours now...Its almost noon in Ct now..
Hubster is going to come home early with his office work too. :)
Hope everyone is well. Please keep some prayers for Lil Austin and his mommy as he recovers from his surgery and for Sweet Reagan to leave those lil fingers alone and give her mama some giggles!
Ok Im done ramblin. Till Next Time America.
xoxox ((hugs mamas))
me.

Man vs Snow

2011-01-28T15:38:00.005-05:00

Oh man! We probably have about 2 and a half feet maybe 3 on the ground now and with all the shoveling its sure piled up. Some towns have declaired a state of emergency as they have maxed out their snow removal budget...Here are some pics from around my house. The first pic is the pile after the first storm and then later on the pile is what it looks like today.

These bad boys hang from the back gutter...Hubster is determined to chisel away at the ice but BOY is it thick. The Ice is now bigger by probably a foot!

Well its been a week for sure. barely a day of preschool...next storm maybe comming WED which is when madie begins her week...She goes Wed, Thurs, Fri and all the storms seem to come those days...sigh. hangin in there.
Went to see Nuerology at the crack of dawn this AM in downtown hartford traffic and we were at least 30 min late..but I was so happy they saw us really quick. Been instructed to UP the Keto and keep meds the same for now...still having one big bad Tonic Seizure a week...:( BUT BUT the sparkle in madie is so great! she can be a little sleepy sometimes and I am blaming the stupid meds on that one..seems nothing out of her norm. Ohh she is a demading little person for sure....wanting to be entertained and Crrrrrrryyyyys if she does not get what she wishes...ATTENTION! This mama is tired by about 9....LOL

I have been trying to battle my own demons too...Ok well to put it vaguely I am going to take a break from the ol Wine Drinkin....Not saying I am compleatly quitting I may order a glass at dinner or whatever but I felt it getting really bad..like one glass can never be just one glass..has to be like 4 or 5.. And I am simply taking a break. quitting well...ya never know. I am usually pretty honest in my blog so I wanted to share that. I guess you could say I have a tad bit of a love affair with my Pino...
SOOOOO almost one week down without...One day at a time. Please encourage me to not give into my demons...*sigh.

Everything else is the usual around here. Been making lots of soups and freezing them and making brownies and hangin with madie....my sweetpea.Trying to just chill out and feel better.
And with madie well...she is Ok. Just gotta get this kid back into her preschool routine! AND stop all this snow!
Enjoy the pics :)
Have a great weekend folks.
me.

Ps and yes last record breaking snow was in Winter 96 or 97 I think....I think we are busting that one this winter!!

Snow!!

2011-01-16T17:04:00.006-05:00

I guess the BBQ is cancelled...hahaha
OH man....Last Tuesday Ct got pounded with snow! about 22 inches in most towns..Lucky Madie had TWO days off from school....one day was an delayed opening and of course that means no AM preschool...*sigh...lucky girl! Happy as a clam with no therapies..When School was back on Friday she had a great day which was awesome to hear :)

This was right by our front step...the small bush was crying for help as it was weighed down by so much snow! Miles was prompty outside shoveling with the neighbor accross the street..helping out the Older lady accross the street and clearing her driveway as well..it was quite a storm!

And Veiws from our backyard and our deck where we have had camping chairs out there since the summer...and no one has put them away....now they are compleatly ready for the garbage...when they defrost...LOL (Just think of that Everybody Loves Raymond episode with the suitcase that no one unpacked and Ray ended up putting old cheese inside to make his wife smell it and maybe move it..LOL) I cant tell you HOW many things are like that suitcase in our house...even if its a small tissue on the ground..

No News really...kinda wanted to share some snow pictures..there are rumors that WED may have more...and that CT has nearly maxed out its snow budget with this storm...oiy...then dont come plowing and sanding when there is an inch on the ground! *sigh.
Madie has been OK...we got her at alllllmost 3 ketos a day...other than that she wolfs down her pediasure when I give it to her...she is hungry. Hungry for Keto is another battle....
Please Keep lil Austin in your prayers too. Speedy Recovery :)

I guess thats all Ive got for now. Cant take Madie in snow or she will freak out. LOL

((hugs))
AND OMG Do not get me started on that Patriots Game!

Sparkles. Glimmers of Hope....?

2011-01-06T08:32:00.008-05:00

Such a Sparkle Madie! :D Great Days at home :)
We FINALLY have her eating 2 full Keto Bottles a day..not fully into it but an awesome start considering it took us months and months to get there! *sigh..
Now I am still sceptical of this Diet...I mean ALL this time....A DIET?? Why couldn't we have tried this when she was just a small baby going thru about 20-40 spasms a day! Well Spasms are Spasms...we have kinda ruled out those these days..though hints of "hyps" in her EEGs (which hopefully in a couple months we will go Hartford and have a big long overnight er) There was no drug that helped Spasms..they were present and they did their damage. It was the most heartbreaking time ever..right on top of having to give her daily injections of ACTH.

We are slowly still getting her off her Pediasure...some days can be tricky and some days she flies thru it. But lately..say past few days...
So different. Like a small sparkle in her eyes..Not turning cartwheels of course..lol but just happy. Alert. "With us". My dream that this diet works and we can lower her Depakote.Get her off I dunno..that is scary but at least give the kid a less drugged frame of mind for once in her life. No one can convince me that the meds have not taken a toll in her growth and development. Folks I think we have tried EIGHT.If you dont include the Vitamin B6(LAME).
The lack of Carbs and boost in mood and lessening of seizures (twitches, Jerks, Drops, Med Seizures) has gotten me almost nervous..not in a bad way..like that nervous excitement..just maybe just maybe cmom madie girl cmom...show mama that this is working..Holding my breath this week for our "weekly grand maul" and hoping and hoping that I can get her into this diet fast enough without rushing it. Its like how some kids when they barely eat all day they dont have many seizures...strange yes, but when I think about this diet and how it has low carbs and she is still eating (as opposed to NOT) Are ya following me here? That maybe just maybe this diet will work.

No one will ever know what caused my madies seizures. We can only try to control the seizures the best we can. I think she will always have seizures...its always going to haunt us that she could go into a bad seizure at any time..I call them the little demons in her head.Trying and Trying to slow her down and succeeding. Sometimes I want to throw my arms and up and declare defeat! If I give into that I will certainly be in therapy. (although therapy sounds kinda good).
I have always been in a world of "maybe". Maybe this or that will help or work maybe we can try this doctor maybe this specialist, maybe this therapist...
I say well if she is 8 years old and finally walking so be it.
Its hard to explain Madie these past few days. I have not seen this Madie in a loooong time. The rolly polly kid, the LOUD kid (happy of course), The "no sir Im playing and not going to bed at 930" madie, Giving so many hugs and wrapping her arms around my neck or sitting with me in the chair with her arm behind her head wrapped around my head..lol. Just a Sweetpea. Please Keep the good kharma and prayers and "Go Mamas" commin thru. I need those big time.
Wrap your arms around yourself and squeeze...cmom folks..(((((group Hug)))))
:)
me.

PS
Please Keep Prayers for Lil Austin who will embark on a journey that may grant him seizure freedom next week! And for Lil Reagan to keep her smiles and let her mama get some sleep! And just give Miss Zoey a smooch. Just because. LOL

Happy New Years.

2011-01-01T17:12:00.003-05:00

What a fun time New Years Eve! had good friends and family over to our house, busted out the folding table and covered it with cute table cloth and candles and my mix of plates (I have none that match..lol) I cooked up a big oven roaster and some cheezy potatoes and carrots and a nice crunchy salad. Wine and Beer optional but well taken..:)
We played Apples to Apples the Bibical Editon and laaaaaaughed and laughed. We played CLUE and Monoply card game :) When it was almost mid we had to watch the frail Dick Clark drop the ball in NY. Fun Times. Even Magic the Kitty hung out downstairs looking for "chicken treat"
Madie was an ANGEL...even went to bed at 9pm like clock work right after she had a big present in her pants..lol Seizures were kinda a pain yesterday morning but overall a good mood as the day progressed.
Today She has been in a refusal to eat her Keto or her pediasure. *sigh. But Seizures have been LOW and she has been real happy. It makes me belive that this diet WILL work. I mean think about it..no food, no CARBS...no seizures. BUT she really should eat! But eat that NO carb FOOD!! ahhh!!!
I gave her a scooby doo vitamin this Am with her food but aside from that first bottle and then maybe 3 more oz of Keto she has not eaten today. happy as a clam downstairs with dad by the christmas tree.
We are sad to take it down. I have taken all the christmas down except for the tree.
Well Today was a sunny mild day in CT..melting some of the snow we got which is nice but muddy on my sneakers ack. We went to this yummy breakfast place this morning (not so good for any other foods) with my brother in law and his girlfriend who were at our house last night too. It was nice. Hopefully we will have them over again for a little relaxing football game tomorrow.
Well I guess I am rambling. I am actually hangin in there. more tired from staying up till 1am and then getting up at 715 with my trusty human alarm clock.(HA)
Not much else to report I guess. Happy New years. Now take your trees down and lights down and lets get back to normal.
Ok time to do some laundry. Jealous??
Me.

Christmas has come and gone.

2010-12-26T10:57:00.004-05:00

I hate that I have to wax my eyebrows and my lip, I hate that I have such a big butt, I hate that I have anxiety attacks that have crippled me at times, I hate that I live so far away from my family, I hate that the cat only pukes on the wall to wall carpet in the bedrooms when we have wood floors, I hate when people stand too close to me and I can feel and or smell their breath, I hate that all my clothes are holey.....ok all pretty lame ass things..
All of these things are fixable. Go to the salon..see Rebbecca the wax girl, get up off my ass and exercise,(huffing and puffing) take my paxil, move closer to family or plan visits more often, close the bedroom doors so cat doesnt go inside...and take a few steps away from dragon breathers, go to the store and buy new clothes..Easily fixable right??
I have said it over and over and over that Seizures are my weakness.. and seeing my baby have them. Seizures I cannot fix. Seizures I am powerless over. Doctors to me are the "guessers"
I Guess this may work. Lets Guess that maybe this dose will work. Oh, I guess that did not work. Hmmmm what should be the next guess??
Its exhausting. Thinking abouit seizures, seeing seizures, trying all these stupid meds for seizures and watching madie look dazed from the increased dosages, talking about seizures when people ask how madie is doing..never anything cool like "Oh madie was standing in her crib this morning or WOW madie ate some carrot pieces today and was chewing! or I heard her say "ma ma" and it was amazing!
Exhausting the fact that Madie has such huge aversion to foods that she still eats nothing but bottles and I feel like its my fault for just being lazy and not "dealing" with foods or being more aggressive with her intro to solids..I get on a roll trying once a day or twice a day with baby foods and think that I am on a roll then things dont progress...and LOTS of baby food goes in the garbage or leaks in my fridge or cements itself to my wooden kitchen table and counter tops (which will someday be replaced but STILL gotta take care of what we have!) which means more work and more baths more laundry and more patience and more more more...I feel like I am being served a HUGE plate of food and being told to hurry up and EAT..but I am ready to puke. How about Overwhelmed. Yeah lets say that.

Chritsmas was great on the upside. Wonderful family and fun times. This mama got 2 Barefoot Contessa cook books and a new set of Paula Dean YA'L Cookware among my other small presents a couple of movies and a new camping chair. From mt family I got gift cards and cash and Madie got some adorable clothes and two new winter coats! Great Grandma Voegler also got us a food processor so we can make some foods too..SO hard to remember everything we made out like bandits! It was wonderful to see everyone too. Hubster and I stayed at a Hilton Garden Inn too...Pillow Top Memory Foam mattresses....Mommy LIkey! Madie was good, She even napped at my Aunts house in the same room as her other cousin was sleeping...it was a world record for them to sleep so long! hahaha
Christmas in CT was wonderful too. More Christmas cash from grandpa and great g-ma and another cook book for mama and some cutie baseball stuff for madie and OH Madie got herself a beanbag chair too...hee hee.. cutest. just plop her in the thing and she is happy. WHEN she is not hungry or wanting up. ha.
It was a busy day for sure. Stayed all day and she fell asleep right when we got home without her bath. She will be off from School till after the new year. No new years plans...Grandma and Grandpa are going on a Cruise the day after so no parties. Maybe we will do some dinner out someplace or at our house....we shall see.
I guess I am done rambling. Hubby is out at store getting some milk etc....and I think I hear the little person stirring.
It was a big seizure morning.
Please just keep faith that I can get this diet going and that I can somehow make ketocal taste good to madie. GAH.
My Brother in law told me yesterday that Miles and I were the best parents he knows and that we are doing everything we can possibly do to love and care for our madie...re assuring me that madie is a happy kid..I kept my cool and did not break into tears.... If only I felt strong enough to conquer this with avengence.

Hope everyone had a great Holiday. Big Hugs and Kisses to all our sweet peas.

Me.

You think your cards are bad?.....LOL (warning shows card)

2010-12-15T12:16:00.011-05:00

Christmas Cards are my thing...I dress the kiddo up like a doll and I snap her picture in some kind of christmas theme...
I wanted the card to be perfect. I wanted a new picture and all the ooos and ahhhs from just how delightfull she would be in picture.
Well time was ticking and the nasty preschool cold has hit us all..a miserable little sick girl who would not smile for me.
Hubster says I have many great pictures of her from the past few months and that I should just make a collage of them. Sooo after the attached failed attempts(kinda funny pics when I look back at the usally photogenic lil girl of mine..Now none of these are the actual card..I did go and use some old cuties of her...

Yeah she was not happy with mama...got me back however giving me her germs via slimey loveys and wet willies in my eyes! Ahh Motherhood,
We had a yucky morning this morning..I woke desperatly wanting my tea and honey..realizing we had no honey..but hey, no biggie...so I feed kiddo, get her in her new red shirt her Auntie got for her, pigtails...got the car running to get her to school and when I came in a big seizure had struck.
I just held her and let her rest..called school to cancel and just cried. Not so much out of frustration..just out of feeling like crap and on this ONE day I neeeded her to go to school...Well so far she has slept about an hour just in time for me to try to take a nap wakes up...but I guess its all good. Kinda used to it.

Got a call from the Hospital Nutritionist asking how we are doing on this very frustrating diet...We bumped up her Nuero Apt that was today at 9am to after the holidays too..I kinda just gave her the scoop and she says not to give up and that when we get to 3 Keto Bottles a day to add the multi vitamin in the mix..Not really much else to report on that.
In a few days we head to New Jersey (shore area) to see my side of the family which is always an adventure but so worth seeing the gang. We will stay at a very nice Hilton Hotel and have some of that yummy breakfast the next morning before we hit the road.:)
In the meantime just another freeeezing day in CT..id almost rather have snow..instead of this bone chilling breeze!
Hope everyone is hangin in there and have a great weekend.

Well anyhoo....Here is our card. Close your eyes if you dont want to see. :) Still waiting for them to arrive! I ordered 50...I seriously dont know if that is enough! LOL

Its beginning to look alot like Christmas...*sigh.

2010-12-07T18:32:00.008-05:00

Not the best picture but Madie was loving this game with dad...LOL

No new pictures really.. feeling my posts are a little dull without. I am working on the chirtsmas card picture but I need to find cards first! Maybe Ill just order online instead of going to the store and looking thru tons of cards..

Everything she tries to get in her mouth or give a big lick! LOL

Well to say that things have been super dooper is lying. Seizures have not been great and this diet has been going very slow. very frustrating. And to top that off she is so constipated all the time who wants to eat when you got all that poo!
Neurology told me to get her some Mira lax and give her just a little tiney bit to help out..have not gotten to store yet to get that but I will soon...
When seizures hit her they are so strong. Oh man. Its so hard to watch her little body going thru that. I am on the edge of my seat when she is at school worried that she will have one at school...I carry my cell phone with me and the home phone..I hate to feel that. They LOVE her at school..they want so much for her..they are willing to fight for whatever it is that Madie needs. Gosh we are so blessed with great schools...Great Preschool, great Town...great. Just Blessed in so many ways.
But why cant I just relax. Sit back. breathe...let the heart slow down and soak in how blessed we are and try to believe that everything will be OK. *sigh*
Those of us with any child..weathor special needs or developmentally on target will ALWAYS worry about our kiddos.
Madie and her Meds are still the same no change in those..I feel like its too much for her. She has these "hazy eyes" sometimes like she is dizzy or just kinda loosing her alertness for a few moments..I cant explain it. may be a seizure too..ya just never know.
I guess with ANY meds..even if its for a cold or the sniffles can make kids woozy...but this is meds that she has to take EVERY day...I could handle an illness like a cough or cold better than this. Her nose has been very crusty too...yuck oh. I get a wet cloth and a wipe her crusties and sooner than later they are back..she HATES when I mess with her boogers. Oh and her hair. LOL
As the Holidays approach I am anxious. Busy Busy Busy parties, 3 hour drives to Jersey and Local Family Parties and lots of food and people. I am still a Turkey Day Girl My favorite Holiday. I seriously think my favorite gift last year was my new slippers..lol next to the new winter coat from my mother in law and my new cell phone from hubster :)
Christmas Time is just busy everywhere...cars and people and grocery stores and more cars and more people...gah.
Kills me that I am so far from my family. I miss then alot and certainly on bad days would love to just go over and visit. or have them for dinners etc etc..stinks we have to drive so far and some of the family only sees my Madie once a year! I miss my sister alot too..shes about 2 hours away in Mass..she spoils Madie rotten with wonderfull boxes full of christmas presents all for Madie :)
Well..I guess thats all thats in my head today..its been a good keto bottle day so lets hope sooner than later I get her up to 3 keto bottles a day.
Next week we have follow up with Nuerologist.dont feel like we have much to report but she is also due for some blood work too. fun fun fun
Have a Great weekend folks. :)

Slow and Steady.

2010-11-27T08:21:00.003-05:00

Well Turkey Day has come and gone. Turkey, Potatoes, green beans, sausage stuffing, more stuffing, sweet potatoes, apple pie, Pumpkin Bars...all so Delicious!
Madie is usually a pill at family gatherings and she sure delivered. We were lucky to get maybe a 45 min nap out of her but that was that. come and go with moments of being happy..*sigh. At least I was ablet to eat my food in peace.
We were all in food comas afterwards... the glass of wine at 3 did not help. I knew we had to get home and that Madie was not going to bed till 9.. that made me more tired!
Good Times. Great to see all the gang home from Mass(sister in law) and DC(brotha in law) making their cameo appearances and leaving a day or two later...
Madie continues to be pretty blocked up Poopwise...sometimes I wonder if she breaks into crying because her tummy is hurting. Her fits come and go...dont understand where they come from sometimes...but the poops are sure hard. Ya know kiddo, THE DIET would help soften them up?!! just sayin...
Oh and this Diet..reeeeeaaaallly slow start(s)...gave up for a couple weeks since she had a bad stomach bug and was having horrible diapers...NOW at this moment we are kinda back in the beginning...slow and steady getting her off her beloved Pediasure..once we have her fully on the diet (who knows when) we can see for a 2-3 months period (doctors tell us) if we see or DONT see anything different..
Still roughly once a week we see a large grand maul...and she is still bugged by Myoclonic Jerks and Quick Tonics...on a daily basis. As more and more time goes by I try not to loose faith that we will get a better grip on seizures. Will they go away?? Well..I try to think clearly and say probably not and try to just go into acceptance... Then I try with all my might to add a little positivity into that and say "maybe just maybe"...always a glass half empty kinda gal where hubby is the opposite..*sigh.
I feel a gut wrenching each time she has a bad seizure...since we really don't know what causes her delays seizures have been to blame. I feel like she is taking 3 steps back in her development each time she has one. She still manages to come out as same ol madie in the end...same ol Plateaued Madie. Mamas Angel.

Don't really have anymore news on the seizure front..
DID NOT go shopping yesterday. I do Panic horribly in big crowds.( I panic anywhere!) I went to Children's place and got my little baby cousin an outfit...then I was done. Whew, need a glass of wine to battle that mess! SO I wait a few days and go then. SOunds good to me.
Today nothing planned. Miles has had the whole 4 day weekend off from work and he heads out today to pick up an enormous SUV rental for his project on Monday but other than that. Just me and the kiddo. Hopefully she will be in a better moood. Think she had small fever yesterday dunno..which may have brought on the seizure she had last night..I blamed me giving her tylenol...but try to think otherwise. Oh and when I was taking her temp up her bum bum she proceeded to pee all over me....good times. HA
Story of My Life.
Hope everyone is well this weekend.
Well its looking like breakfast time, Tummy is rumbling.
xoxox mamas. (and dads :) )

Square One.

2010-11-18T17:26:00.005-05:00

Yup. Square One. back to the beginning. We finally got all the Ketocal in the mail and we are READY! yup...NOW we are ready!
Kinda had a tough start.She had some kind of bug and was having horrible messy diapers and crrrrying and crrryying just couldnt make her happy. I said OK lets wait till the keto comes in the mail and we are fully stocked and the diapers get better and THEN we can start.
There may have been a slight procrastonation on my part...

Madie is and always has been a horrible eater...I cannot tell you how frustraiting that is that she doesnt chew normal foods..
I have not tried solids in awhile. due to I dunno...giving up. being flustered with it. and when I go with the solids..say oh twice a day for a couple months and the feeding doesnt improve. I get lazy and go back to the Pediasure. Its a bottle, Its easy to just pour in, no laundry of raggies and bibs and stained shirts and screaming kid who hates everything to do with food.
I have also avoided going the G-Tube route...I cry thinking that I may have to suck it up and get one for madie...force feed her. MAKE the food go down. The only way we can tell if this diet will work is if she cooperates..
DO I sign back up for that feeding therapy??
Somedays I feel confident that MAYBE just maybe I can pull this whole thing off. So far she has yet to accept and or finish a keto bottle...Sometdays I think she would rather go hungry than eat that stuff...sigh. Then I loose faith in myself..and she crrrys and crrrys cause she is hungry!! Absolute refusal of her Keto Bottle then chuggs her pediasure. *sigh.
Hubby and I head out this weekend to buy a food processor and get some foods made and frozen..even if they are just snack portions thru the day its something..there is no doubt that she will be hungry. I am so concerned with getting the right ammounts of things in the ol tummy...worried she will get sick from "lack of"... We also have suagr free vitamins to add to the mix too...Sigh.
Just Give it a couple months Madie!!! Please help mama with this!
Poor kiddo has been so needy! so clingy to mama. so much wanting constant attention..which is GOOD like something of a spoiled little brat is brewing in her brain...LOL
Took a weekend last weekend and went to the shore by myself to visit with my mother in law and some of her lady friends too. I tell ya I came home feeling so rejuvinated. The most rested I had felt in at least a week and half!! The mear fact that there was no dishes and no laundry and Im not sitting there looking at huge dust bunnies that if I dont get up an vaccume will hop away thru the house.. Dont forget the constant needs of miss america.. I just push myself to go and sometimes a gal just wants to be a lazy bum. But my house will show that if I am for too long! AH!. At 4 years old the naps for the kiddo are getting shorter and shorter!! HEY is that a MILESTONE!?? LOL Write that one in the books! if I ignore her too long she will let me know that is for sure! The ol Noisy Box Play gym can entertain her for so long!

Preschool has been Ok...somedays are good somedays are bad. had a big bad seizure last week at school and I was just beyond sad for her. Went to get her in the health room and her teacher was with her just rubbing her back and sitting with her..it was the sweetest. Poor baby girl I just took her home and got her in her jammys and held her till she fell asleep. :( Twitches and Jerks and small tonice persist.
Things..well particarly MOODs can be unpredictable with madie. Lots of times I dont know why she is crying or winey or sleepy...sometimes it makes no sense.Thanksgiving may be a tough day with all the people as I am a firm believer that she gets overstimuated and the noise and people (although all willing playmates) can get to her signaling a meltdown beyond my controll.
The mood can change like the flick of a switch. One second compleatly content then next breaking down in tears..then minutes later she is fine...
I surrender!!

BUT when she is happy...oh boy. she is a sweetpea! laughing and death gripping my head and giving hugs and holding onto mama for kisses...Ohh she KNOWS! Booger.
Today has been kinda low key. Pretty cold outside and a short day of school for teacher meetings and Turkey Day arround the corner. We went to the local kids consignment store and got her a great sweater jacket for $6.50! nice and thick and not like those huge marshmellow down jackets that smother her little frame..haha Hopefully it will work out till it gets super cold and snows.
Anyhoo..Im being sumonded..
I will certainly blog in a few days and let all know how this NEW start of the diet goes. *sigh*
The Plan now is to get her into at least a few bottles per day durring the holiday breaks.
As for now. Well Funny shows tonight and high hopes of getting the kiddo to bed by 9.

hang in there my fellow bloggers
Me

Rough Starts...and POOP. yup.

2010-11-10T16:59:00.005-05:00

I have so much to type but I am so scatterbrained right now!
$500 Dollar Grant from Hartford Childreans Hospital to help pay for madies ketocal!! I think that will give us enough to see if the diet will actually work!! :D! I am overwhelmed that this has been given to us. Just WOW.Blessed and Blessed.
Insurance continues to say that its not nessesary for madie. DO they have kids with seizures too? Doubt it.
Sad news that madie had a bad seizure today at school and I had to go pick her little self up. I was almost in tears in the car and got her home and by that time it was time for some pediasure so she ate one of those and fell asleep for some time. Has been a little off today but otherwise pretty happy. Poor baby girl.

I called Nuerology concerned about the fact that I am having alot of trouble getting ALL 10 oz of her keto bottles down the hatch...and before we began the diet her poops began to smell super bad...Ok now poops smell bad.... But not burn your eyes bad...like a fresh box of moth balls! and ammonia....super potent.
I cannot blame the diet cause we saw this before we started on Sat...and we arent even fully into it yet!
Med Realated? Liver Related? Gosh that is my hunch and its scary. Hoping to hear back from the Pediatrician tonight or tomorrow so I can get madie and a poopy sample to them so they can test and see what the heck this kid is pooping. aside from nasty pellets from her depakote sprinkles.
I know its gross...but heck if anyone who has been on the sprinkles and had these poops and I can let them know how madies came back.
I was told by Neuro to just keep her at 2 keto bottles a day for now and to not increase till we find out what is in the poo. Yup. As far as trying to get 10oz down the hatch well its getting better than day one...8-9oz can get down for now.

Aside from that her mood has been very fussy the past week er so. Clingy as can be to mama...cries when I put her down or walk past her and dont carry her. Sad at school and happy when I get her in the car..a regular homebody she is. Its tough when I get the grumpy reports from school and when I get her home she is FINE! *sigh*
Even after todays seizure I brought her home and a few hours later you would never guess that she was so off this morning. Still bringing her in tomorrow with hopes that the day goes better. Hopefully we will get in the afternoon to the pediatrican. as well.
I am still pretty on edge about this diet and dunno how in the world I will pull it off IF it works..
Hope everyone has a great weekend and Ill keep ya posted. Time to get the lil stinker in the tub. :)
Me.

Insurance Co's and Anxiety.

2010-11-06T10:33:00.003-04:00

Ahhhh Healthcare. ya gotta love it.

Well we are kicking off the diet today. A rough start. Supposed to have 10oz each feeding when she used to have 16oz of pediasure in the morning then an 8oz after school and then another 16 oz before bedtime. NOW we have to try 10 oz at a time..This morning she gagged and fussed and ate 6 oz of Ketocal and left 4 oz. We do not have any jucies in the fridge yet except for OJ so we mixed in 2 oz of that to make 10 oz of feed... Does that make any sense?? Well my stomach churned as I was mixing this into her bottle and well...I dunno what she thought of it. (gag)
Hubster took her out this AM and I graciously stayed behind so I could get some thoughts out. Kinda a mind cleansing. He went to Kholls the home of the "2 day mega sales" to hunt for a food processor to make her yum yums...mayo and chicken ya know..lol (my magic bullet bit the bullet...hardy har)
I am super nervous about this diet. I am a bundle of anxiety. Trapped in my anxiousness. Panic attacks galore. I NEED to stop looking at the whole picture and just take ONE day at a time. Madie is Madie. I want to KNOW what the diet will do. I dont want to worry anymore about seizures and her development and if this thing will mess with her tummy or make her vomit. Unfortunatly the only thing I can do is wait and see. Waiting is probably the worse thing you can make me do. Aside from dropping me off in a busy shopping mall...(lol)
We are still trying to get someone or some company or some insurance to pay for this stuff too..The samples from the hospital will not be enough. Like we need a case of this crap..the cans are small.. Talked to a woman at Graber Pharmacuticals that distributes stuff like this and she was so apoligetic to me saying that Anthem is not accepted by them and that since our secondary insurance CVS caremark prescription plan (dropping names) has denied the stuff 4 times already... She was so sorry saying there was nothing she could do unless we were on welfare section 19 (It would be given to us no questions asked) and if my husband was not working...She was so darn nice and thought that she was going to CRY talking to me! She was so nice..trying so hard to work it out. Gave me her number if anything and all I need is a credit card...(sigh) We are still going to work with Anthem instead of Caremark to see if we can clam it as a medical nessestity... that is to be continued. In the meantime there is a program at Miles' work that may be able to get some for us. we are waiting to hear back from them.
AND we will also try another company...Nutrica the company that makes the stuff.
*sigh* dunno.
Workin Workin...not giving up. We have been so blessed with supportive family and friend and even folks I have never met who live accross the US loving my madie and reading her story and giving me pointers or just a "You can do it mama" and it means the world to me.
In meantime we have about 2wks worth and a couple juice box size premade samples to get us thru for now.
Well time to go defrost some chicken and get more laundry going.
Please send good kharma and prayers we can pull this off...and mama can be less anxious and overcome her anxiety...Please throw in a good one for Austin too..he is about to embark on a journey that could grant him seizure freedom as well.

((hugs))

whooooaah Ketosis! :D

2010-11-03T19:43:00.006-04:00

Well the Meeting of the minds has come and gone. It was long one. My head was spinning and anxiety was running high in the teeeny tiney room that was filled by the small table I was freakin out. I hate Anxiety. Its really crippling. Well Madie began to cry half way thru so I took her to the waiting room and we sat in the chairs. almost falling asleep..
Hubster got alot of the info and all I really wanted to know was how to make up the bottles..how many carbs per day she can have and how to incorporate that into the mix...and of course the list of foods.
Every other day we will add more and more bottles of Ketocal to the mix. 5 10oz ones if she JUST eats Ketocal. We hope to get some food in there too...maybe cut one or two bottles out...use milk or juices instead..dont quite know yet. SO it wont be entirely Ketocal but we will start that way..
For the first time ever I am going to have to have a "meal schedule" and I have no idea how that is going to be pulled off.. Hmm
I sat in the waiting room with a sleeping Madie for awhile and wheeled her around the circular hospital floor..watched all the seizure kids come and go...EEG's and such.
We are going to give the diet 2 months and then well...if things are good we continue for a bit...if no change and we still see "Episodes" well then we can the idea. and we stay on the Depakote Sprinkles.
Lots of things to crush, Lots of things to mix, I am YES overwhelmed by the whole thing. Was in and out of panic the whole meeting. nodding as I understood things and asking no questions...chugging my water bottle and telling myself to keep my shit together but all I could think about was getting out of that small room..
I cannot fathom a life without Seizures...to see my Madie be seizure free?? Whhoah there buddy dont jump on your high horse yet! One day at a time. See how it goes. Slowly intro-ing the new stuff as we get rid of the Pediasure. I just get nervous since she has always had poopy (blockage) issues I do not want big diaper explosions..ack. lol
My hopes for this thing?? Well as nice as no seizures would be I keep that idea at bay(in my secret wish basket) but even if we say saw like 1 a month or 1 every couple months..and no more annoying jerks and twitches..knocking my big girl sitter over :( boo! Did I mention the nice little nugget on her forehead? poor boo boo!
SO in a nutshell I hope it helps. I hope I can pull it off. I hope that it doesnt give her digestive issues. I hope we can go down on meds a little...alot of hopes. After 8 medications I try to still have hope! dangit!

Halloween Past. lol

2010-11-02T13:39:00.005-04:00

Well Halloween was not it was all cracked up to be in this house. Madie was just a grump. Winey crying...dunno what the deal was. But it was real cold outside anyhoo. We tapped out at 6 bags of candy and had to turn the lights off we had so many! My favorite was a cute harry potter and a father/son Dracuala..
Things are going in the household. I am really nervous about our apt tomorrow for the ketodiet...Whew. Its that Anticipatory Anxiety. I hate it hate hate it.
Dont know what to expect. 10am sharp! Hartford!
Tonight I will make dinner for the gang and we will feast. Fill out bellys for a busy morning tomorrow.
I hope everyone is well and hangin in there. Seizures Low?? Happy Kids?? Oh I hope so! A little boy who was in madies class last year had a big bad seizure last weekend and was in the ER.. His mom is a good friend of mine and I feel so much in common with her. It broke my heart to hear that. Big Seizures are sure scary. after 4 years ya thing id get used to them but I just never do....
Last Big bad one for my madie was Oct 20th...goin strong...FoR now.
*sigh.
Well nothing to blog about but here are some funny halloween pictures of me when i was a kid. yeah yeah let the blackmail begin...

Over the Sickies!

2010-10-29T11:52:00.005-04:00

Its been a booger of a week. Literally. Lots of boogers! ack!
I was compleatly miserable for one day and just hangin in there for about 3 days. madie was sick last weekend and I was sick by Mon.
I am feeling SO much better..about 90 percent now. madie is about the same. her usual little owl self...whew.

Had to go pick up madie at school early today...*sigh* no no no NO seizure...Just winey..crying alot..unconsoleable. They walked her around they held her they sat her up... I came by to get her and just blamed it on the fact that she was probably sleepy since I could not get little trickster to bed till 10..But in my mind I just knew she was being a pill.
When I took her out of her stroller she gripped tight to my jacket and death griped her legs around me and held my face with her other hand...Let the happy noises begin. OIY.
Well needless to say she is fine.

HEY PEOPLE. I HAVE THESE DAYS AT HOME! cry cry cry CRY ME A RIVER! I wish I could just say.."oh sorry madie is being grumpy can someone come get her. NO NO I am not annoyed. I mean if you cant console her just call me Ill come get her. No need for her to be crying at school all day...I guess. But I savor my 2.5 hrs alone with no duties. and then come 9pm the me time comes again..but for a short hour then bedtime cause by then Im tired.
Had a gorgeous day yesterday. It was awesome to get out and get some silly pictures of madie in the front yard. (well our 2x4 front lawn..lol) She was all about that tounge! SO SLIMEY! eek!
Its been 9 days since her last grand maul seizure on October 20th...We are going NEXT WEEK for the nutritionist apt..I am uncertain how to feel about beginning the diet... with Madies low number of seizures..(still small ones in sleep sometimes and jerks or drops...) MAYBE just maybe she will have relief?? It will be a grand day if we can look back say..oh a year from now and say that Madie has been seizure free on her diet and lower her dose of meds etc etc.. although I do not forsee being medication free I hope to see MUCH less seizures..who knows what madie can do.!
I would love to have her able to pull to a stand someday. get up on those little bitty feet..
Ok so not expecting this Diet to bring mircales..dont get that impression..Just hoping for less seizures...better EEGs..happier madie=madie who tries. Madie who is happy= strong madie. LOUD madie. giggles and wiggles..lol
Now that we are over the sickies I am feeling stronger. halloween is here and we have yet to get candy but its al good. Pumpkin Carving tonight or tomorrow and that is that.
I will blog after our apt on WED! can I get a "whooooaaaaah Ketosis!!"

have a safe and happy weekend :)
Me

Geeerrrrms! ack!

2010-10-26T20:39:00.005-04:00

ACK! I hate being sick!
Madie has not slept a wink today! Maybe she is actually doing something developmentally on target at 4 years old...NO NAPS! ahhhh!!! I was so out of it today forcing the sudafed down the hatch and forcing myself to keep going without keeling over. At least Madie was happy. Happy and LOUD and silly girl. It sure helped! She may have slept for two 10 minute naps. One nap I was all excited and layed myself on the couch and was pretty much melting into the thing when she began to cough. Just little coughs but it sure woke her up. Back to her owl noises. STINKER!
I was also going to have the family over for some dinner tonight too but cancelled that. :( Even made a cheese cake to lure them in..ha ha my mother in law called and said I sounded horrible and that maybe we should do it another time. Yeah...in my haze I guess I agreed. No one wants snot river nose serving dinner eh?? :O
Quite a nice day today in CT...almost 75 degrees! nice to open the windows and get some breeze in the house. fresh air is good!
Even kitty was outside all day. Its nearly 9pm and she is finally back inside.
Well anyhoo....its quite the germ fest here. Madie was the sick one over the weekend and then by monday I had the bug.
Looking forward to preschool tomorrow and having a moment to just take a second...
Watched the movie The Blind Side today too...good feel good movie. Dont understand how Sandra Bullock won the uh..Oscar?? But it sure was her best movie. Rented out from the Library. Free is good.
Well I guess the Advil has kicked in and little one has tuckered herself out...hoping for a good nights sleep....
Will Blog more another day. Stupid A key is sticking on my keyboard. LOL

Sweet Dreams Kiddies.

Birthday Girl

2010-10-21T15:37:00.006-04:00

Happy Birthday Little Boo Boo.
Four Years Old. Geeze.
We by no means made a fuss of her B-day...I even had a big ol cake with no one to eat it...even Madie did not try some...dunno. I was just not that into it. Wishing she was different at four. Bigger. More advanced. I say each year to myeself "Madie this will be a big year! Big things to come!" and she seems the same to me. :(
I was thinking alot of my parents and how I miss them.
Then I think if they had not passed away I would have never moved to CT and I would have never met my Miles(thats the hubster) and alot would have never happended...
It was meant to happen.
I have dreams that my father faked his death and that he comes back to me...like literally to my doorsteap. Telling me he is sorry for leaving me and that he had to do what he had to do...
I remember his funeral as the most traumatizing day of my life. We drove in a snow storm to Union City NJ to my familes funeral home and the whole ride (I was 16) I was listening to my Eric Clapton in my walkman....Tears in Heaven was the jam of the night....*sigh.
I was unable to walk to the front of the funeral parlor...my knees shook and bucked out from under me. He had a smirk on his face as he layed in the fancy "final resting place".....
I dont remeber anything else about that day. Is it so weird how our brains work and block out things?? I seriously dont remember much. I know that I remeber his warm hands and his great big hugs and his cheesy jokes and the smell of coffee and cigarettes on his clothes after a day of work.. about a year after dad died so did Mom.
My sister and I were sent to CT to live with my Great Uncle...who was OLD....he has since passed away...now as a more responsible adult I wish more than anything I could make ammends with him and tell him I am sorry for smoking pot in my bedroom.....and of course driving him nuts....staying out all night...
I hope he sees me from heaven and is proud of me...and knows that I am sorry for being such a punk. ( I had pink hair too!!!)
Suppositly I stood up in a court room and said that I wanted to go to CT....(we lived in MD)
To this day....I am 33 I do not remember doing that. My Uncle and I were at Odds ALL the time...I was 17 going on 18....No parents and WHO CARES...I inhereted a big life insurance policy that my dad had...at 17 I was granted 52 THOUSAND dollars!!
GONE.
where you may ask?? Gap, TjMaxx, Craft Stores, the MALL, shoes, Cigarettes, Booze, Express, The Limited, Bed Bath Beyond.....LOL Gawd....you name it I shopped there.I was 17!! and feeling like I could buy anything I wished! I wish like heck that I was not granted that money till I was older.. Boy we could sure use that money now... Well if dad was alive Id take that instead!

Dunno where all this is comming from tonight....*sigh* Just thinkin.

********
Next Day.
Whew, That is an earfull..almost just deleted it but heck, Ill just leave it.
Today we head to families house to have dinner tonight with everyone. Madies Auntie Brenda is comming to visit and we will ambush her with food folks and fun after her travels..lol
Happy Birthday Madison. mama loves you. Please be a good girl for me tonight!! Happy Happy Joy Joy.

Little Pumpkins. :)

2010-10-17T18:44:00.008-04:00

NO GRAND MAUL SEIZURES THIS WEEK!!!
Am I aloud to brag? I know that sometimes when I brag I jinks things! So I will just say ONE good week DOWN. One day at a time. :)
It was about 65-67 degrees in CT today and windy! But the sun was shining for the first time in days (gets depressing) we went to the local farm and took a hayride to the pumpkin patch with Madie. :) She was not liking the sun in her eyes which kinda made for some tough photo ops...LOL

But we made it thru with some cute shots.The rest are on my facebook if you are my chum on there you can see the rest. :)
I have been on the edge of my seat lately with anxiety...I hate worrying so much about madie at school and her seizures..though I am so thankful that last week went smooth with no calls to come pick her up. I just hope that the good weeks continue and all I can do is like I say...One day at a time,

In other news.
Well My Miss Madison will be FOUR years old come Wed. FOUR! I think I am just making some dinner and a cake. No need to make a huge party out of it. Though Miles may be all gung ho on a BBQ... Eh... madie doesn't care.
As far as school goes I dont think I will make a fuss...madie really could care less if she has a party or not..lol. Im sure she will come home with some goodies..maybe I will just send in cookies. dunno yet.
Its amazing how time has flown. Oh My Madie. The hopes and dreams I still have for you! Four Years Old already. Dunno what to think of that. She is still so behind her peers but at same time has come thru so much!

We have also been on her Depakote Sprinkles for about a couple weeks. The first week we had horrific diapers...we wont go into detail about THOSE.. BUt I insisted that it was just TOO much med. going to 2 capsules twice a day...so I kinda just go and eyeball half a capsule along with one full one in the AM and still give her 2 at night...well wouldn't ya know it. No more bad diapers. ZING.
Could have very well been a stomach bug too...ya just never know. But she has been fine for a few days now sooooo.....(oo reminds me I have to call Htfd and tell them she is better) Things have been pretty good seizure wize...we have yet to begin the keto diet which is all ready to go as of Nov 3rd!! maybe we can nab these dang things in the BUTT! Still seeing some funny jerks here and there and I have a hunch sometimes an absence seizure here and there when she is all out of it. Could be med related too or sleepiness...
*sigh* If I look into it too hard my brain will explode! Oh wait, been there done that.
I think the Sprinkles work better than the liquid. Kinda doesn't hit her all at once. which is awesome for school days. I dont get as many reports about her taking 20 min naps anymore..:) I cannot say enough about how wonderful her school has been not only to madie but to US! They got her into what is called The Backpack program which each week fills a backpack of stuff that madie needs.. things to take the financial burden off of us. Last week we got a pack of diapers, wipes and two packs of pediasure! AND a bag of donated clothes! Some were so cute! some were ehh...LOL but I was overwhelmed!! I felt for the first time a small load off my back..hoping that this helps us not only with lower bills at Target and the Grocers but just more of a sense of security..not worrying about having ZERO dollars and madie needing shakes..
Even though she will be OFF her shakes in a month er so with the diet! :D! Wont Miss em! The smell begins to smell like Vanilla Vomit to me...LOL
Well I better get scootin. Madie is sure a giggle bug today. I Love these honeymoon days I used to call them when her seizures were really bad... But there has been more of those lately...the kiddo is feeling good. Now if only I could just sit back and enjoy...without being on edge about Seizures! AHH!!
have a great week everyone :)!!
(((hugs mamas))) and dads too :)

Little Stinker.

2010-10-13T15:47:00.007-04:00

Ok SO we have changed her med to the Depakote "Sprinkles" since Sat....
EACH day she has about 2-3 horrible messy diapers! at 2 capsules in the AM and 2 at night Its just too much. I am working on getting that dose down. maybe I can empty half of a capsule and have one and a half? UGH. Dunno But the poop is floooowwwwing. and that is not like madie. she usually has the opposette in her diaper...LOL Golfballs!
Ok I know you dont need to know that...
Other than the red hiney and lots of cream...
Next weekend we will go pick our own pumpkin and get some cuties of madie in the patch! :) Ill take pictures thru our whole pickin journey. hee hee. We get a hayride to the patch too! Hopefully it wont be horribly muddy like last year!
Still smilin. Still hangin in there. Some cute fall pics from yesterday hanging out in the yard. School week last week was uneventfull no calls to come pick her up.
We have been so blessed! madie is also enrolled in the Backpack Program which offers her weekly packs of diapers and wipes and a 25 dollar grocer card for her pediasure (which she will be off of in a couple months..but still) Its so Awesome. We just bring her bag in each week and they fill it! :D! So Awesome!
Oh and Nutritionist appointment First week of Nov..(the 4th?) and we get the Diet going. Please keep that good Kharma and Good Prayers commin! Still seeing one big seizure a week..with small nagging ones thru the day. :( Cmon Keto!
Mama gets to go to her Physician tomorrow for a check up...ugh Totally dread going..I really need a fitness buddy...lol whatever happened to rollerskates? I loved that when I was a kid! Boo to Rollerblades! Have you seen my scars from that fall??? ha!
Me.

NEWS!!!! OMG OMG!

2010-10-07T17:32:00.005-04:00

PS.
12 cans of Ketocal per month GRANTED from ketocal company themselves!!!!! We begin on Nov 4th! I am beyond....I dunno....SHOCKED! I dont think it has set in yet and why am I not jumping up and down screaming THANK YOU JESUS!~???
Maybe it wasnt Jesus or God who had anything to do with it maybe it was all the phone calls and the letters and the phone calls and the letters and the phone calls....you get the drift...
Maybe SOMEONE just held me up and said "Jamie, dont give up, keep at it. Madie needs you"
All the good kharma and prayers paid off. Im not the most religous person but hot dang someone was on our sides..A few guardian angels maybe??
I can name a few....
Nutritionist app Nov 4th and we get the game plan of how much of this stuff we really need...maybe not 12 cans a month but extra is good!!

Ok got some sauce on the stove. and ONE Fly in my house following me everywhere!!! Do I smell??

Adios

A letter...to the healthcare advocate..Love, Miles.

2010-10-07T08:08:00.002-04:00

Hi Maureen -

We're obviously both a little confused about who is trying to do what for our little girl. I don't think I need to point out how frustrated we are with this whole process in dealing with insurance denials. It was our understanding that you were only called BECAUSE the insurance appeals were unsuccessful for this formula. I know that's what the nurses at the Children's Hospital thought because they have called my wife on more than one occasion asking if we had heard any progress from your dealings with the insurance company. To be honest, we have grown accustomed to having to fight for our daughter to be allowed treatments and specialist visits; when the insurance company held firm with this denial, we tried various things recommended from the hospital staff:
Obviously, our neurologist sent in as many appeals as he could until they ultimately said stop bothering us.
I tried myself to contact the insurance company (both Anthem and CareMark) but was met with black and white plan coverage information.
I have spoken with my company human resources personnel, who "looked into it" just to decide that it was the insurance company's decision if they want to award services above and beyond what our plan covers. This is where we thought a Health Care Advocate such as yourself was stepping in to try and push the insurance company.
We've tried social security disability and found out that because I am employed, our daughter would not qualify until she was 18. It didn't matter what salary I had, as long as I was employed that was that.
We've tried other social services with similar results, never qualifying because we are above the poverty line.
I've even been in contact with a local Save the Kid foundation that would like to help, but since the hospital heard that insurance denied the claim, they have not moved forward with developing our daughter's specific nutritional plan.
At this point we're ready to just purchase this prescription formula ourselves without any financial assistance, even if it means falling behind on other bills. It's just unfortunate that almost everyone we have dealt with, while always sounding genuinely concerned or optimistic, still ends up treating our situation as nothing more than a paperwork trail. I know that Madison is our daughter and not the daughter of an insurance company or a doctor, but I would really like the day to come that someone treated her like a person and not a patient number.

I'm sure you have done what you thought you were supposed to do, but after dealing with these types of battles for over 3 years now, without an end in sight, a think we owe it to our little girl to get a little upset when it takes 2 or 3 weeks for someone to simply read a denial letter and say oh well. If there is ANYTHING you think I can try next, feel free to let me know. I for one have not given up on my little girl or this treatment.

Miles van Noordennen | Project Scientist
MACTEC Engineering and Consulting, Inc.
1090 Elm Street | Suite 201 | Rocky Hill, Connecticut 06067

Weddings and Updates

2010-10-04T14:59:00.004-04:00

Had a meeting at Madies school today. Went well. It was a gloomy drizzly day in CT and I was in no mood to leave house.
All Madies therapists were there and we all talked about how Madie is doing which is pretty slow progress but they seemed to focus on the good things she does and they emphasize how they just want to keep her happy thru her days. Madies mood is very inconsistant..which is juuust how she is at home..makes it tough when she cries and no one has any idea just why. I tell ya, Madies a gal who knows what she wishes for and we adults go thru hell trying to figure it out!
They talked about how they include her in all the classroom activities even if she just sits to the side she can at least see and hear what is going on. She loves her OT sessions most of all...full of vibrating toys that she loves and swings she loves even more..big belly laughs on the swings! haha
PT is going well too..she spends time each day in the stander workin her muscles and then goes thru exercises to work those little arms and torso.
I guess we can only take things one day at a time. One moody day at a time and one seizure day at a time..
Miles and I also got away last weekend for a wedding my cousins wedding in Jersey..I seriously recovered for 2 days from this! But oh it was so fun! and the food was YUM!

The Drive was not bad..but in my standards anything over an hour and Im ready to get out of car..lol
Hotel was nice too they only had two double beds available but I will still hold a special place in my heart for the newwark airport Hilton...LOL
I guess not much else...still hangin in there...hoping Madie can make it thru this week at school without a bad seizure again...I have had to go pick her up every week the past 2 weeks...every THURS...strange.... *sigh.
Lets hope for a good week Madie!! :D!
have a great week!

Just Yesterday

2010-09-30T13:19:00.004-04:00

Madie conversing with her hands..."ya know Im gunna getcha" LOL

Just yesterday these are the images of a BARELY a seizure day! What a great day we had..even a good day at school..I took her to the farm and got the mum plant for the porch and took her pic next to it...I guess it had been awhile since I had sat her down and gotten some shots of her.

Just yesterday I was thinking that maybe just maybe we had been sucessfull in increasing her Depakine but a ML each dose and that maybe just maybe we were not going to see another grandmaul.

Got the ol Call from school that madie had had a big bad seizure at school and to come get her...GREAT....
Durring Picture Day...all the kids were croweded in the Gym and getting their portraits taken..I opted out of buying any packages since...well we are broke and two I can take her picture myself for alot less money...Psht.
They tried to get her in the class picture and she was pretty out of it but I agreed that maybe we can try to get her in the pic...in her stroller and all...Oh how i wanted her to sit on the bleachers...and be smiley....:( Of all days.
Well we left the school and I brought her home and let her sleep. and sleep and sleep
She is awake now playing in her noisy box like nothing happened.
I came home and wanted to cry...you know those crys I talk about the messy ones...blubbering and messy and snotty....
But I kept on...watched some DVR stuff and did some laundry and just tried to forget about it for a few.. I want to wear a shirt that says "I am doing the best I can" and call it a day. hell, I can make one!
*******
Well its been awhile...and this afternoon has been good. madie is back to her usual little self as if nothing happend. We have been seeing one big bad seizure a week for the last 3 weeks..dont know what is bringing these on but we are trying to get a grip on it.
I have had enormous suggestions on the Keto Diet and what I can do to make things and still have the bottle but not use KetoCal. Super interesting what can be done!
Almost ready to switch doctors..enough is enough...no more freaking med increases already...PLAN B!
Well better get madie in the tub..stinky girl needs a bath.
have a great weekend.
Going to a wedding in Jersey this weekend and Madie is not making it easy to leave her behind. But I know that hubster and I just need some time.

Epilepsy Walk

2010-09-26T18:25:00.006-04:00

What an Awesome Cause.! Now to tell you who Sharron was she was a nurse/teacher who died in a cross country bicycle accident.. she worked allot with Epileptic patients her brother who is a nuero surgeon doing this in the name of his sister (Sharon..after she died) and Sharron was an advocate for Epilepsy too.. Her brother stood up saying that about 10 percent of new Epilepsy cases could be avoided if the person had a helmet on their noggins...freak accidents...terrible stuff...

He stood up and was thanking everyone for coming saying that he was there with his wife who was an ER nurse as well.

Madie couldn't have been more content...loved loved riding in her stroller checking out the sites.. I took pictures of funny signs and the beach that was right next to us as we walked with the salty sea air...an overcast day but that was OK. :)
Found a small garden that had a sign that said "madisons garden" It was so cute..dunno who this madison is..but it was a much needed photo op.

The funny ways she lifted her legs up in the air...just so content...making her noises. At one point in the beginning while the guy was speaking Madie let out a nice "hoo hoo hoo hoo" I was so trying not to laugh! haha

Its been a great weekend...:) Even went to the small town fair on Sat and it was fun but HOT as heck so we did not stay long...
Wish every weekend had such activities going on...it was so fun to get out of the house and get sunshine and just enjoy. :)
Mama is beat...now to get little giggle to sleep! This may be tricky....LOL
More walk pics on my facebook page..Blogger is super slowwwwww...Ill work on em tomorrow :)
have a great week, :)
http://www.sharonforepilepsy.org/overview.html (kinda the scoop about the walk if I did not get it correct.)

what a morning....

2010-09-23T15:55:00.003-04:00

Im sitting on the porch reading my new Nicholas Sparks book..yes hokey but I really needed a lovey story to read...setting the usual mood of a bed and breakfast type of town near the beach where boy meets girl and falls in love..but there is always a secret in there someplace that comes out and in the end makes no difference in the love the two share...*sigh....I just love it. LOL in my broken camping chair as the foot rest has finally detached itself from the chair..LOL listening to the rustles in the woods hoping its not kitty catching me a new rodent-like friend.
My cell phone rings and its Madies school.
Madison has had a big seizure at school and I should come get her and that the Ambulance has been called.
Ok OK before we all GASP and repeat the word Ambulance...
I get the to health room fast. I live about 3 min from school...she is in her stroller still looking pretty out of it. and then smaller seizures continue to come.. jerk, a twitch a roll of the eyes...oh you name it...madie is crying as I take her out of her stroller and lay her down with her blanket where she cried and grabbed tight to her blanket.
I was sitting in there with her teacher,the nurse, the nurse's Aid and even the principal...
Waiting for the EMTs to arrive. EMTs?? Oh gee...
They ask me a slu of questions like how long has madie had seizures and if this is the first time she has had a bad one as she did that day...asking me what meds she is on and what meds she has been on...
HOW in gods name do you explain to people who are making me feel like I have no idea what I am doing and ohh that I really should call her doctor to have her checked out as well..
OK what is driving to Hartford Hospital going to do??? We alll know she has seizures. We (Me, Hubby and Doctors) all know that we are trying to gain control over her seizures and are doing the best we can!!!
I had to sign papers saying that I did not need them to take her to the hospital and that yes I am aware that her seizures are getting bad and yadda yadda..
I just wanted to scoop her up and run out of there..... I just could not believe the ammount of folks in there...as I frantically tried to call the nurses in Neurology to get them to give them the OK that Madie was OK even if I repeated it a million times and said that we are working on her meds..and that there was nothing I could do at that moment except get her home and let her rest.. I could go on and on how the school is just doing their jobs and really want to watch as closely as possible any of the dangers associated with seizures etc etc...
I think at one point she was so overstimulated that small seizures just kept comming and stiffenings and blank stares....Ohh like I said..I just wanted to hold her and let her sleep and get all these people off of her..
Yes It was bad one. I called Nuerology FINALLY and then went to get her blood work done... as she screamed the whole time after I woke her out of her seizure sleep....but it was needed... and now we will know tomorrow what the levels of her V.acid are...maybe just maybe they are getting low...maybe she is getting used to her med...who the heck knows. Got her home, took her little socks off and got her in her comfy pants and she was passed out...for about an hour and half...
I felt like the school was just waiting for me to say that I was going to take her home and "fix her" When EVERY DAY....I have an ache in my heart for my angel. I am at the mercy of the doctors who tell me to what to do...try this med..try this therapy...When for real when it all boils down I am her best advocate.
If a med has a bad effect I insist to take her off...If a therapy seems like bullshit I get her out (aka feeding therapy when a 20 year old tried to feed madie for 30 min)..
You could say I want to curl up in a ball and forget about today. Ready to watch some funny shows and have a glass of wine. Just spent.
I guess that is all I have to say about that...Thank you Forrest Gump.
Blood work is done. The day is allllmost done. Tub Tub time tonight and some mindless funny TV shows. Life is Grand Ok done venting. ahhhh. :)

Much Better.

2010-09-17T14:44:00.004-04:00

Ok I have breathed a sigh of relief as my madie is back to her usual little demanding self...*sigh.
Wrote a note into school telling them to keep a "count" of seizures or "moments" that madie may have at school and told them about Monday's bad seizure...
Dunno if telling them was good or bad...ok good. I SHOULD keep her school informed on what is going on with Madie and her seizures and overall health..its only right that they know and are alerted to "watch out"..
BUT Geeze...ok so I am on the phone with nurse..a sweetheart of a woman and she is asking me exactly what they should do "the seizure action plan" per say..
I try to assure her that we RARELy see these grand mauls and they have been kept pretty at bay for many months...things just "happen" with Epilepsy...they just can zap little ones when the least expect it....sadly.
Mostly smaller versions or medium versions (as I just saw mid way thru typing this..ugh) occur.
She was asking me if they should call the ambulance and I was like Uhhhh unless it lasts a long time and or she turns blue...which has NEVER happened there is not a need to go all out like that!
SO there was a big fuss at school over it but I guess that is a good thing that they care so much about my madie.
After all that was squared away..I called Nuerology and they said that they would send a lab form to me to get Madies V.Acid Levels checked to see if maybe they were getting low. We went up to 4ml twice a day on the med and now we wait a week. Cant things just work the next day??? Then again if they really did work they may just do that...
UGH.
We all know the drill...waiting for meds to take hold and "work"...
She woke this morning in pisser of a mood...crying and refusing to eat any sort of food and crying some more...I put her in her bed after some frustraition and she just zonked out. Zonked out 20 min before we were supposed to leave for school. I just let her sleep and kept her home.I was convinced she was punishing me for going out last night to a CAbi party..Its like a overpriced designer fashion party...you get to try stuff on and tease yourself with the most amazing black pants (I have several pairs that just dont work) that cost 98 bucks...and hubster has banned me from the ol "devils card" It was all and all a great night of pretending I had money and trying on some of the most comfy fabrics ever! Good Times. I hope to get those pants someday though...;) We also munched on addicting appetizers and enjoyed good conversation. Love it. :) was thinking of hosting my own party too...I would get 50 percent off the stuff If I did! (woot)
Anyhooo I will leave you with this:
Well as I type I have both my front and back doors open with hopes that a small chipmunk will make his way outside...I did however find the poor things TAIL on the carpet!! I was sweating as I made my way aroud the house standing on all the furnature with hopes of no colapses... trying to find this small creature that the cat dragged in!
As for everything else...well we are much better. chillin. just hangin out on a nice breezy day with madie. (and a headache that was my fault)
Have a great weekend! get those grills goin! YUM its the season! :)

Me

Rough Day....maybe a few F-words....:(sorry ahead of time)

2010-09-13T09:20:00.003-04:00

Sometimes folks. Ya just need a good blubbering making a mess of yourself cry. Im talking like run out of tissues, use the last facecloth and resort to your shirt cry.

From making her usual noises...sitting next to mama...to me holding her convulsing in my arms..eyes wide and mouth wide body stiffened...just going and going and going..seemed to last almost 2 minutes. I just held her so tight and said her name over and over frantically hoping she would just snap out of it. I began to panic as I thought it would not end...pictured myself getting her to the ER with no carseat in my car as hubby forgot to take it out of his.... Well seeing seizures as long as I have I know that you just have to let them run their course...their damage...I should be used to seeing them by now....
I never can get used to seeing large ones...we see small quick ones alot but when the large ones come they are not often but they are downright scary "stuff"....
She was like a spagetti noodle afterwards. compleatly floppy. I held her and wrapped her in her blanket and let her just lay down....nothing else you can do...

Fuck You seizures. Fuck you Ketogenic Diet. Fuck you medications.Fuck you Insurace companys.. Fuck you. Just Fuck. just.....*sigh.

I wonder if she is comming down with something? Is it because the last few days I added some Duo-cal to her bottles for some extra carbs and calories since she was not eating too well (AGAIN)?? Ok Ok I get it...maybe too much carbs...ok ok Ill stop the duo-cal but do I have to pay for it for a few days?? Does madie have to? WAS it the xtra carbs?? Would this keto diet WORK?? just a small hunch...dunno...feel that was the only thing that changed!!
she was doing so well....
Ok so maybe its just one of those things that has happened...BUT WHY?
Well my Madie sadly had seizures that may never be tamed. maybe she will always have seizures..
If I believe that I will compleatly loose it. I HAVE TO STAY STRONG. I have to..(insert blubbering cry we spoke of earlier)
my Humbele apologies for using the dreaded F word...I like to keep my blog without that word...
When I see how Madie is when she is happy and wanting me to pull her to a stand and giggling and wiggling I know that things will be OK..that madie is telling me that she will be OK..that she can handle this. I mean I guess she already has...some days I feel like MAYBE she will outgrow this...maybe that is what will finally be her relief from this...
No understanding that mama has to try all these medicines to HELP her...making her once so out of it she was sleeping allll day ....and then one day I just had it..weined her off all but V.Acid...and brought her to life. Ok so we see maybe a seizure or 2 a day but were they ever compleatly gone@!? with more meds I think they were WORSE!

Put in a call tearfully to Nuero Nurses...who have really been awesome thru this...although pretty stuck in a dead end with her so called start of the Keto diet..which we coulda started in JULY!! BUT anyhoo.....put in a call and asked if we could maybe get her V.Acid levels checked soon..maybe she is getting low...gaining weight?? Maybe the med is just not working anymore?? maybe maybe maybe....screw maybes...

Sorry about the depressing blog....I hate these kinds...I also feel a certain weight lifted off me when I "write" about it..
I can hear madie making her silly noises already...30 minutes after that monster. Then only a few minutes later she is back to sleep...dunno..
Not asking for Prayers at this point..maybe some good faith sent my way..
I had an old friend tell me its not about believing jamie, its just about having faith.

:( Me

cutie patootie

2010-09-07T13:57:00.006-04:00

So Breeeezy! she loved it!

Sat outsdie for hours....it was wonderfull :)

Had a WONDERFULL weekend! The weather was sure on our sides! It was great to see evryone at the beach house and to get outside with Madie-san. Whom for the most part was a good kid. Sat out at my favorite spot in the backyard and took her picture and read my book and just for the most part..chillaxed. Ate good food had good company and well guess no complaints.
It was great to see my brother in law who was home from DC for the weekend and meet his new girlfriend who was very nice. And my sister in law brought her new boyfriend too..it was just a meeting of new people. Miles is the only married one in his sibings and I get to meet all the girlfriends and get attached to them only for it to not work out. I did really like my sister in laws old boyfriend who was with her for about 3 years..kinda sad she has moved on so quickly but as long as she is happy I am happy for her. dangit.
Well anyhooooo I made raspberry cheese cake that was to die for and we had some grillin and salad for dinner. too many late nights for me..taking a break!
Miles and the guys went on the boat too and went tubing and he came back with a horrible sunburn for sure...but now that gives him an excuse for a back rub with the aloe...trickster.
Speaking of tricksters! My cat brought in a LIVE chipmunk today and the thing ran into my very small bathroom downstairs (its a half bath)..SO I locked it inside the bathroom and stood on the toilet trying to figure out how to catch this thing and get it back outside untill it managed to get under the door and into the house! I just went to the front door and it ran out...well that was easy...at least it wasnt a bird. holey shmoley.
Madie is starting preschool tomorrow!!! HAIL to the preschool gods!! I am going out of my mind to find the cutest outfit she can wear..hahaha with her pigtails and her sneakers. She will also be turning 4 next month...crazy crazy.
I guess that is all for now. She is sleeping FINALLY at nearly 4pm..good thing I got good sleep last night.
oh and seizures have been about 1 a day...maybe 2 somedays....but GOSH....just go away already!!!gah!

have a great week.
:) me

Sweet Madie.

2010-09-01T15:59:00.003-04:00

Oh My little Angel.
Hard to controll seizures are just so hard to predict. WHEN will she be hit...will today be a good day? a bad day? was she grumpy this morning because she had a seizure before I saw her for the first time? Its sad that any sort of "off" behavior I think to myself that maybe it was a seizure.
i think those of you who read my blog know that we never did find a reason for madies seizures and never have found a reason for why she is so delayed. No offical diagnosis. tests continue to come back relativly normal.
Seizures these days have been VERY good...LOW numbers for sure. But they always let us know that they are still there...like yesterday when I was feeding her and she had one in her highchair..oh poor baby made a mess with her food when she did not mean too and I was wiping food from her eyes and hair..
There are good things happening too.....

She been so interactive! I mean in good ways! While seizures seem at bay for the most part she is such a joy when she is happy and eating and pooing and napping...(all the essentals to a happy madie)

Was playing with her last night and she was laaaaughing and laughing as I was giving her raspberries on any part of her that I could catch...her arms her tummy her legs...Oh she was so funny...knowing it was going to tickle..and at 915 when I am ready to put her in bed how can I complain...lol
She loves to be pulled to a stand...cannot hold herself up but lifts those arms up to be pulled up..and laughs and laughs..then bends her knees up and down and "dances" but THAT is not going to hold the silly girl up..but its hilarious!
I try to focus on these things...the things that show me that madie is with me..she is lovin life and mama and just being silly. the more laughs the better in our house!

Took Madie to the inlaws beach house on Monday and tuesday and she was an ANGEL! A bad bad heatwave was heading in on Tuesday and I did not pack enough clothes for us..or I woulda stayed longer!
I just missed the gang and needed a dose of some family. Made everyone my Roasted Chicken I got from barefoot contessa and some cheesy potatoes too :) YUM.Madie being in such a great mood was SO NICE. She was a joy with whomever would give her the attention.
This weekend we head back for some Labor Day fun my brother and sister in law will be home from DC and Mass and we will be BBQing and hangin out. Just hoping that madie keeps up her good moood and doesnt give me a hard time. Planning on a couple nights to take full advantage of the weekend. Supposed to be in the 70's too...hard to believe when its nearly 100 now...
Anyhooooo...
Pictures are from this morning on top we have been in our jammys all day. and the second one from our walk to the top of hill....took a break and saw her in this pose cracked me up.
Lets just keep hopes that seizures will stay "better" (knock on every kind of wood product or anything that may look like wood)
Preschool begins next wed!!! WOO HOO!!!

PS I will NOT go into the fight for the KetoCal right now....its an added stress i wish not to think about right now.

Good Day.

2010-08-27T20:42:00.004-04:00

Busy Day today..well actually more getting out of the house than usual..such a gorgeous day!!

She was so funny with her feet she always had them in her hands...so cute

Just some random pictures to share. she was sure a fussy subject you would never guess the crying fits she had inbetween pictures..hahaha

She is wide awake as I type..rolling her tounge and playing with dad and getting herslelf into all kinds of pretzel kid positions except crawling or standing!

Took Madie to Barnes and Nobles books and then to the grocery store..by then she was sleepy..and we were stuck in traffic the whole way home there was 2 accidents on the main rd home..nothin like sitting in traffic worrying that your oven roaster chicken is spoiling in the trunk! hahah
Then after about an hour nap I took her to the farmstand and we got some corn and cucumbers..YUM. All in all a good day. Seizures? Well who was counting...really was taking a break from paying any mind to them. :)
have a great weekend folks. :)

rain rain go away...mamas brain is fryin!

2010-08-25T14:39:00.003-04:00

Days like these make me just want to nap all day....gloomy, rainy, no sun...totally stinks. But the upside is that its a bit cooler outside so I dont need to run the AC.
Feeling just "bla" I guess. Madie is doing Ok. she is surprisingly being very good for mama with the occasional meltdown but otherwise tolerant of everyday happenings..
Hubby is working long days and leaving the house about 6am and coming back about 730pm...and I guess this is going to be the work weeks for the next 3-5 years of however long this huge dig is going to take...
Pretty much already feeling the wrath of the long days with Madie having to entertain her and not having dinner till late..although I am not one to have piping hot dinner waiting on the table for my husband..lol Usually just wing dinner..Sadly hubby has a limited menu...and I am always wanting to try new foods..go figure.
Well anyhoo...
yeah, Its been a long few days. Slow days. rainy days. Watched some IFC movie (independent film channel) with Anne Hathaway in it...a character out of her usual..playing a teen who runs off with drug dealers...hey boys, you get to see her boobs...LOL Its called Havoc...Pretty heavy movie..pretty BAD. I am a geek who loved her in those dang princess movies and devil wears prada...hahaha She is just like able and pretty :)
I also love really twisted dramas...or based on true story kinda movies..scary ones! and the classic horror movies...well maybe not too classic..Texas Chainsaw, The old Halloween with Jamie Lee Curtis when she wasn't doing Activa commercials..lol, Night of the living dead, The Omen, Exorcist, or the old movies where you get the ditsy girl in her knee highs and underwear running from the killer cracks me up. We used to have an on demand on our old TV with a channel called Fear net and Ohhhh boy the bad horrors on that channel! I LOVED IT!
Kinda strange coming from a gal who suffers bad anxiety attacks huh??
yeah so now you know that about me..
Hubster and I have been to the theater maybe 3 times since madie was born. TOTALLY behind in my new movies but I do really enjoy waiting till they come to pay per view and watching them then. or the 7 dollar DVD pile at Target whichever comes first..HA.

Madie has been an Angel today. Dunno what suddenly makes her sleepy at times when i dont see a seizure and she suddenly is just ready to crash... I have a horrible suspicion that she is having Absence Seizures...maybe I just dont realize it. Maybe time for an EEG since things seem to be going better..eh?? I know the doc would do it but would Insurance do it??
Madie is also getting super heavy. and mamas back and arms are paying the price with the weight gain for sure. Dunno how much she weighs cause I dont want to see how much I WEIGH...but It has to be over 30 pounds..
then again some days she just wants nothing to do with her foods...she is just not hungry...that may also explain the sleepiness...but what can I do?? she wont eat she wont eat. Not going to force the kid and watch her puke up all her foods...*sigh.
Then will come a big stinky and she will spring to life...Trickster!!
Ok enough about that..
Hope everyone is having a great week and hangin in there. Cant wait for Preschool to start too!! I miss madies teachers so much! Well also I haev to admit I miss the mornings off as well...

Till Next time.
HEY am I the only one in the world Hooked on that show The Gates?? Hahahaha probably huh? its pretty bad but I cant stop watching!!

la la la la Madies World..

2010-08-18T11:12:00.007-04:00

Howdy Folks in the above photo Madie is playing with her Jiggler Toy...this toy was given to us by her Birth to Three OT..it was one of the many ways we encourage her to use her hands and chew and hold...she loves this thing. We do not know how many batteries we have gone thru! It can run about 20 bucks online and come in differnet annimals.
Well today I am hangin with Madie..school is on break and Madie is on break. she is such a booger! Seizures have been really good for reasons unknown..this whole Seizure disorder thing has allllways been so unpredictatble. I have read alot about Epilepsy and about Infantile Spasms and lennox gaustat syndrome (which docs say she has) and well...I always felt that if we could just get Madie seizure free she would take off in her development. OOh how I wish this would happen. Oh how I wish my baby girl would pull herself up to a stand and show me how big girl she is!
Epilespy is more than just having seizures for some. My father was Epileptic and lived a normal life and was a pretty smart guy..doctors have told me that seizures are not genetic. (dunno)
Its been good days with Madie. she is such a booger. Love Love love when she takes a nice nap from being sleepy and not from a bad seizure. (although maybe meds can have a part)
This mama is tired. she is tired of seizures and tired of worry and tired of anxiety feeling trapped in my own anxiety and fears of the unknown.
I am always looking over my shoulder at madie.Looking out for seizures and looking out that she is not getting herself into what we call "the fall zone" basically any area off the carpet near the wood floors or hard object as a table or chair..LOL and its tricky!! She is quite the little roller and wiggles on her blanket..there is just not enough room! It would be amazing to finish our large basement and have large carpeted safe zone.. to make room for the TV and madies play things. lots of rooolllin room! hee hee. She gets on those little knees and pushes and pushes wioth her little hiney in the air..its too funny!..I think she wants to crawl!! never know what Madie is trying to do..I always say she will do things when she is ready. when MADie wants to. not when I try to ballance her on her hands and knees and push her. she will for sure cry!
A sure sigh of relif when Miles gets home from work and I can turn my back for awhile. lol
Soooo back to my beginning...well Seizures have just been good. Unsure. Kinda hesitant to even mention this. I have been SUPER crazy about getting Madie her medicine at the SAME times each day...between 730 and 8 no matter what time she has eaten...meds come at those times. We dont get up till about 730am and by the time mama has gotten all her yums yums together its about 8am..so thats our reason on that. lol. We haev actually brought her meds to resturants just to keep the times right..yup its craazy...haha
Maybe since I have been good with her meds that has helped...whooo knows. But I wont complain.
She is still her little meltdown self..but alot of times there is a reason..like wanting to be carried or hungry or sleepy..but its just figuring them out that is the hard part!
Things are just going...Im tired. but I keep on truckin. I tend to stay up too late cause usually nightime is MY time to just take a load off..watch some travel channel shows or some mindless programing and just "zone".
I guess that is all for now.
OH OH still workin on getting madie into this dang keto diet and getting the cost of Keto Cal covered by any program that will do so...*sigh* dunno....and GAH>

Hope everyone has a good weekend. Im still recovering from last weekend B-day weekend...Mexican Food hangovers can be a biotch.
(((hugs)))

Camping and Camping...sigh....with Madie..

2010-08-12T18:12:00.018-04:00

My Child is sensitive to the heat. AND IT WAS HOT>
*sigh...the yearly camping trip that I look forward to for weeks in advance as we book a spot in the "heron circle". ALL I wanted to do was relax with Madie..watch and listen to he enjoy..
I was determined to STAY and not leave early.
At times madie just wined and cried and the only thing that stopped her was when Dad took her for long walks in her stroller.

Now allow me to explain.
Sitting on her blanket was not working. she hated that. Going in her porta crib to "cry things out" was not working. sitting with me in the chair trying to soothe her was not working. Pushing her in her stroller would temporally fix the mood and sometimes would put her to sleep then when the stroller stopped or she woke up she would cry. and wine.

After a walk she was FINALLY sleeping...too scared to move her..this lasted maybe 30 minutes...

OH there WERE happy time as seen in my pictures..
It was a 50/50. Half the time she was cool and half the time just miserable.
She was great in her kiddie pool and loves the water trying to eat the water...lol sticking her tongue out for the water pours. THAT was a godsent that little 3 dollar pool!

She was wanting to "feel" water with her tongue...LOL loved the pool..kept her in till she was pruned!

It was really hot. The heat was crakin for sure. Anyone can protest that it was not the heat that put madie in such a foul mood but I can argue otherwise. We went thru a case of bottled water in less than 2 days! It was hot. By nightfall it was really nice outside and the first night we dropped grumpy off at grandmas house that has AC in the bedrooms so we could take a much needed break from Madie...
Needless to say she was happy as a clam over there...rollin on her blanket when I came to pick her up the next day.
I was determined to bring her back to the site and MAKE IT WORK. I was hot, I was frustrated, I was tired, I was more or less hangin in there. I want so bad for Madie to enjoy and just hang in there and relax and give us more than few minutes at a time break from crying. It seems that is all she does! Just hates everything....unless its her way...which I dont know what that is! she cant tell me!!

WELLLL there were good times....I have a funny story actually...
OK OK change of subject...
Dunno if we all have "that friend" you know that friend from your "former life" for me it was the going to business school and skipping half my classes to go to the bar with this particular friend...weee were wild! we loved it! lol
Ok ok so maybe fast forward after business school and she was preggo with her first daughter at 23...the guy she was with was eh....well...she had had many guys and I was allllways there when things NEVER worked out and she was all boo-hooing or trashing the engagement rings.....LOL But she stuck with babys daddy and even married him..in her backyard..I took the pics HA!
Me... I was still dating Miles and just workin and in my own world...I guess...lol a world without her..
When she had her 1st baby we hung out a little..I was still not married yet..she wanted to close the bars and I wanted to go to dinner have maybe 2-3 glasses of wine and call it a night. Our worlds were becoming so different..she seeemed to be staying the same and I was feeling like I was growing up somewhat.
It had been nearly TWO YEARS since I had seen this chick...ok when I saw her last she was pregnant with her second baby girl..and the father was the same guy who fathered her first baby. She was smoking and drinking...WHILE PREGGO!!! here I was dealing with My sweet madie who was born with global delays..after doing everything right.(I hate that term) and hard to control seizures damaging her brain!! Needless to say her kids have HORRIBLE behavior issues...but otherwise developmentally on key.
THIS was what made me cutt her off as a friend. The Choices that she makes in her life and the way she is as a mother.I just cant be with that.
Ohhhh I LOVED happy hour and seeing local bands at the bars....when my madie was born..it was no more! I was humbled. Wine is still my weakness for sure..AH!
Do any of you have that kind of friend from the past that well...maybe they still think you are chummy but you only speak if THEY call YOU....lol THAT is her..
When I heard from her a few days before our camping trip I was shocked to hear that she would be in the area..(niantic shore area) and she asks if it would be cool if she and her boyfriend "ed" came to the camp site that night to visit.....and "ohh she missed madie.." lol
Seriously I was curious.....ya know....just haven't seen this chick in OVER a year...since her 2nd baby was born..never even met the kid...
I said "sure cmom over and visit"
We head to the gas station on Sat night to use the ATM so we can get cash for fire wood that they sell onsite...
VRRROOOM RUMBLE RUMBLE VRRRROOOM
A motorcycle pulls into the parking lot..a biker guy with a small skinny blond with tattered jeans and a cleavage tank top on pull in....
YUP. Its her. and Ed....LOL o...m...g..
I shout to them and they see me and both are very loud and pumped up...they have been drinking most of the day apparently at some kind of biker run...
they are stopping for smokes...
I tell them to just follow us and we can get the campfire going..Once I fed her some food she was calmed down and we just kinda talked and laughed about old times..feeling like that is all we have in common anymore..but whatever..
I feel like I have a new circle of friends...MOMS...the moms from madies school have been so awesome!! We are crrrrazzzzy mamas when we get together for some drinks! HA and I love it! women with values and families..women who I can chat with and laugh with and women who have seen me in my sweats when I drop madie off to school and have seen me dressed up for "moms nights" Do I dare tell Miles that there is another Cabi Clothes Party planned soon! hahah after I spent 80 bucks on a blouse that I have worn 2 times with fears of staining it!
OK OK OK
I guess I am done. getting Hungry. Its 830 and we have not eaten yet Madie is wide awake but will be zonked in 30 min...HA
*sigh*
This gal was in my wedding!!
When you just have those kinds of friends....
Dont worry Madie was at her grammys house for the night...
We woke the next morning and laughed about the two of them and made some bacon and eggs and went to get Madie to begin another day at the campgrouds...

Great to be home now..I tell ya.
Ok this post was too long

is it fall yet??? Im ready for this heat to go away!

me

Brain Farts

2010-08-07T18:01:00.003-04:00

I should have 3 commnets on the last post...I am sorry I was movin too fast and I think I deleted it! I read all of them and I am so thankful for any advice or even just a "ohhh madie is so cute" kind of comment...hee hee.
I joke with my hubby saying that a new blog is like a good satisfying fart.. Ok that is gross but cmon SO TRUE! all full of heart burn and then ahhhhhh....HAHAHA

ANYHOO Flatulence aside We head out tomorrow (well only a short hour away) to go camping by the shore..well not ON the shore but close by...near grandma and grandpas cottage. A small park called Rocky Neck. By no means wilderness camping but we have a huge tent and all the cool stuff to camp with. I hope to take some great pictures of madie and da da.

There is a little news I guess regarding this whole Keto diet thing....well we have appilied to a couple programs thru the hospital and we shall see how that goes..and hubby has a program thru work that may be able to help take the edge off the cost of the keto cal...
CVS carmark had absolutely refused to cover any of this..saying finally that its just not a covered benefit...*sigh*
BUT WE WILL NOT BE DISCOURAGED!!
Seizures have been super low....like Im talkin maybe 1-3 a day..Reeeeeaaaallly good.
WHY"?" Dont know. this stuff just happends! I NEVER keep far from my mind that they could get bad any day...
I have been working hard on giving her medicine at the SAME time each day...between 730 and 8...am and pm...and maybe just maybe that has has an impact?? eh....
Madie remains her little bi-polar little self...never know what the day will bring and so demanding of my attention and at times I think very frustraited that I just dont know what she wants..*sigh.
Makes me love you more and more each day....lol
Till Next time America.
me

Oh my aching shoulders...

2010-08-05T15:41:00.005-04:00

The weight of the world folks...thats me.
madie madie madie...my world. my lovey, my angel. trying as best I can to do what I need to do for you but this mom is spent.
Keto Cal is still being worked on...supposedly. Just gave some info to some lady who will see what this and that can get us...and then the lady who said she would help gave me a number of another woman who will call insurance and help...*sigh. why the hell am I giving the first lady info?? betcha money ill be repeating it to the new lady..who was not there and I left a message..
Now the way my brain works is when something...say oh...the right words I want to say are THERe and ready to tell and i am unable to say them when I want to...well things go "poof" and then by the time I get to the person I so desperately want to tell what I need to tell for madie i am all fudged up. acting like a moron. "uh..uh..uh..."

Just turning into one of those days.
Madie is a sweetpea today THANK GOD but its real hot outside (shocker) and we cant go outside but she is hangin in there.
On the upside we had a great dinner with the family last night I made an oven roaster and cheezy au gratin potatoes and a fresh yummy salad...not much leftovers! I love when everyone finishes their plates. :)I love cooking for everyone even more!
Sunday we head to the campgrounds for a few days with hopes that it wont be too steaming hot...IF madie hangs in there Mama will hang in there...*sigh* TRYING To see the positive side!! PRAYING that Madie cooperates and stays happy....
Well sadly there goes another seizure...number 2 today..gotta go. Maybe I should finally get in the shower...its 4! ugh.

my little handfull.

2010-08-01T16:23:00.008-04:00

Madie Madie Madie MADIE!
My Goodness little girl. You are becomming that kid I just cant take anywhere! In my poor attempt to go to beach cottage this weekend with madie and Hubby (who was a great help!) Madie was just a grump. Someone was always trying to get her to stop crying..winey winey..It was a tough trip for me. Just trrrrrying to take a load off and enjoy the great weather and uuuuuggghhhh
Dunno..maybe she was overstimulated or maybe she was too hot or maybe she just wanted to nap in HER bed or maybe she....AHHH! whooo knows.
Now we allll know that with our special little ones that they cant tell us what is wrong or if they are too hot or still hungry or sleepy...
If I held her and carried her thru the house she was OK...If I put her in her stroller and wheeled her around the house she was OK..
Things were a little tricky at times.. everyone tried their parts to get Madie happy and sometimes she looked as if she was going to sleep in her stroller but began to cry instead. Madie has been sleeping with her hands behind her head since birth and when she gets cranky she will try to put her arms behind her head trying to get comfy but unable to.

just days old..my Orange baby girl...lol
She has been quite the nap fighter lately as well!~ Days Id kill for an hour nap! Just so I can maybe clean something or do a load of laundry...OR even sit down with one of the many books I have bought at the used bookstore and oh...maybe READ it..lol.
I love love to sit with a good book. I seldom get a few moments to just breathe while madie may or may not be sleeping...shes tricky!
When we got home Sunday Afternoon she seriously folks...became a new child.
Happy and snuggling with her blanket and making her noises and just being a sweetheart. even ate her food and bottle (which she would not do at cottage)*sigh*
Got her in the tub tub and in her jammys for the night and she was so content.

you cannot see that her little hiney is in the air and those little frog legs..LOL

Only 2 more weeks of Summer School too!! Oh man! the last week she goes we will keep her out one day so we can go camping :) Ok by no means is it wilderness camping. I hate hate hate buggies and small creatures..LOL BUt I love being outside with the campfires and grills and under the stars. We will spend 3 days "weather pending" and "meltdown madie" pending..I am looking forward to it.
Someday I want to get a pop up trailer to go in..that would be so cool! THEN maybe we can book longer trips..but one step at a time..hahaha maybe we can find a nice used one someplace...hmmm
I look forward to the new school year beginning and Madies teachers comming back for the school year. As nice as the summerschool teachers are they really dont give me good updates in madies notebook about her days.I think I may be at least 10 years older than each one of them too...LOL they are so young! I hear she is doing just fine each day. HEY wont argue with that!
SOOO anyhoo I guess I am done rambling..
SO far so good with my Madie..a little demanding 3 and half year old. I take it one day at a time. Its all I can do.
Off to Grocery store to get some salad stuff and some chocolate chips...going to make some dinner and some cookies...LOL
:)
Hugs mamas. and Dads too.
me

Follow ups. :)

2010-07-30T17:43:00.003-04:00

Went to see Nuero Today in Hartford.I was feeling like I had a million things to do and I coulda gotten them done in the time it takes to drive there and have the apt and drive back...uuuugh.
I was frustrated that we couldnt discuss the keto diet with him.. We have yet to start it! Due to the high cost of ketoCal and insurance denying our 2 requests to cover it..and well lets just say we ALL have bills and KetoCal cannot fit into them.

Madie has been having wonderful Seizure Days!! Now I have hesitated to even mention that things have been good..cause well after nearly 3 and a half years of dealing with hard to control seizures we have been disappointed MANY times.. I only saw 2 today and one the other day. Each morning at school this week she has not had one..which is GREAT! I have blocked out alot of my emotions when I speak to others about madie and casually tell them her story of struggle and my struggle to get her well and learn as much as I can about Epilepsy and seizure types and medicines. The Books I am drawn to like a magnet and read cover to cover with my pen or highlighter in hand. I can read all I want and know all I can about different seizure types but can I figure out what is causing them or what maybe is an underlying condition that is causing her seizures...hell, Im no Doctor...lol

Madie Love Love loves her yum yums....She is gobbling her homemade sweet potatoes I made for her..hee hee These pics were taken last week er so.It has taken A LONG time to get to this point.. we fought with doctors when she was too skinny and not gaining weight against getting her a G-Tube...It was tough call. But I did it!! Barium Swallow studies, meetings with nutritionists, feeding therapies... and ya know I realized that the only person who can get her to eat is ME. I am on it!!Forget those folks! half the time Insurance wouldn't cover the meetings we had..Feeding therapy was 40 bucks a week!! PSHT! NOW.. Opening her mouth for her food and yet she still eats with her hands in her mouth "suckles" her food is the only way I can explain..still unable to "chew" on chunks..but BUT I tell ya...everything mama mushes madie eats!! I call that a milestone!dangit!
Oh Sweet Angel. mamas little girl. Doing well in Preschool as far as I know and can do 25 min in her stander for PT! *sigh* we just keep on truckin.
Went to a real nice Italian Place for madies grandmas b-day last night that TOoo DIE! OMG it was sooo good! madie wined most of the time but heck...I sucessfully ignored her and ate a lovely meal. How? Dunno. lol
When we got home she passed out sleeping...mystery solved! ha.
Tomorrow we head to the cottage I am so stoked for this break in Humidity! Its been boiling for at least 3 weeks! Tonight we turn the AC off and open our windows to hear the noises of outside as we drift to sleep. :)

Crrrazy Fun! and maybe a few updates as well :)

2010-07-26T08:15:00.002-04:00

We were like two kids at the Bon Jovi Concert at Foxborro stadium..I have never been there although Miles has for Patriot Games and knew where to go as far as getting there.

My Sister in Law and her boyfried had WON the tickets at bar in Boston for a charity of sorts and were crazy fools to give them up! VIP parking surrrre was a long walk for us to get inside and take an elevator to our SWEET SUITE seats! and boy that free food and free drink was WAY expensive..

It was a huge open window that opened up in front of us and we could pretty much see all that was going on. Well the folks in the closer rows got a one on one of Bon Jovi Playing sitting on the stage...MAN at that point I was ready to run down!

We had a blast and did not get home till 230 as it took a normally 2 hour drive 3 to get home..parking was awesome but there is only ONE way outta that place and we all funnel into it.
I woke yesterday morning as Madie was crying to get out of her bed at 7am not knowing what planet I was on and bringing myself into the shakes...it was freaky! I did calm down and get her fed and then when she took her nap LIKE AN ANGEL I promt;y took a great snooze..hahah oh man. Not so much Hungover...in protest of my picture..Ok ok maybe I shouldnt put pics of mama having a brew but MAN it was just such awesomeness...so close to the front entrance and chillin with my Grolsh on a day that couldnt have been better at that moment. I behaved with lots of water between beverages as I knew we had to drive home and it was a pretty warm day. Turned into a GORGEOUS summer night for sure. Miles and I broke up the drive and I drove the last hour and half home after the Mass Pike..
Id say more tired from lack of sleep! I forget that I have madie at home for the brief time and take myself back to the Pre-madie days...then at Midnight when we finally got out of the stadium I rememeber and say to myself: "man tommorrow is going to suck" LOL
She was such an Angel yesterday..!~ Took a Great Nap, ate well, had few seizures as well! I love love love good seizure days! Back in the Spasm Days I would call them "honeymoon days" because I knew they wouldnt last. I was almost in tears when she finally tuckered herself out about 915 to go to bed. I did not want the day to end for her. Just keep her happy and keep those seizures at bay..
She was so interactive making noises and grabbing my face and laughing when I made funny noises into her hands..which were not so much in her mouth as they are constantly!
I hold my breath and hope for each day that she is not hit too horribly with her seizures (those little demons in her head I call them).
Sometimes she just bursts into tears for no reason other than she just wants to be picked up or moved around. I think she is frustraited that she cannot move around and at times and lacks the skill to pull herself up up.
Sometimes just walking into her sight she sees me and the arms go out for me to pick her up and if I keep walking it can signal meltdown.
Welcome to the "normal kid"...lol Ill pick her up and she will grip my head and laugh! LAUGH! and have that smile on her face like: "this is what i wish"
Trickster!!
Seizures can usually leave her winey..kinda like she is saying "man that sucked..now I feel yucky"
When Meltdowns occur I try my best to soothe them but usually a few minutes alone in her bed brings her out of them or some bottle as she may be hungry..
Some days I cannot keep up with her hunger and somedays she wants nothing to do with her yum yums. I have been making her some of her foods as well that she gobbles! Sweet Potatoes, Green beans, Mixed veggie, Peaches (although a tad tart)..I think that is all I have tried so far...but YUM she loves it. Warm it in the microwave and instant meal! Im thrilled!
Hmmm in other news...
Still workin on the KetoCal...no long story just they wont cover saying its Over the Counter Product and they dont cover that stuff...OH and its not for Diabeties..
I wonder if we had actually beagn this diet a freakin MONTH ago as planned how her seizures would be???
maybe I will never know if this diet will work for her....
Yes, madie will be FOUR in October!! Enough is Enough.
OK OK OK OK Not Blogging today to be a Biotch...not looking to rant and rave today.
Its GORGEOUS day in CT today and I cannot complain. Hoping to spend some good Q.Time outside and enjoy the break in this nearly month long heatwave! WHEW!
Hope everyone is having a good week.
Me.

Bon Jovi or Bust

2010-07-22T12:32:00.002-04:00

THIS WEEKEND..yup you guessed it. Bon Jovi Bioootches!! :D
My sister in law who is my hero WON tickets to see him in a charity thing and doesnt want to go with her boyfriend so Miles and I are going! First time we saw him was in 2002 at this outdoor venu in Hartford called the Meadows..(now named after some car brand) and the second time we saw him in 2006 we went to Uncasville Mohegan Sun Casino and had like 10th row seats! THAT was the best show..then we took a trip to Boston and hung out for the weekend...needless to say a month later I had a bun in the oven. SO now that I know better...LOL We are going with good heads on our shoulders and a lesson well learned!! HAHAH
This is the first concert since Madie was born. Fer Real!
We have been trying to figure out where the seats are in the stadium (Foxborro) and we just cant figure out where we are sitting...they SOUND like good seats..LOL but who cares!
No other news really..
Had to put comment moderation on my blog cause all the Chinese freaks leaving spam on here...so at least I can delete them without whatever crap they are saying even showing up...*sigh* Yes, It Irks me.
No news on Diet...left message yesterday but I am just out of fight right now..second rejection letter for Keto Cal came in the mail and well...I try to not get discouraged.
madie still gets zapped and her meds make her dizzy sometimes...I wonder if she would still have the same ammount of seizures without meds? or would we see horrible increase...
cmon....diet....:(
for now, cant really talk seizures..its just depressing.
Bon Jovi fever baby.

me.

Hot Days, Wisdom Toofs, and other news

2010-07-16T16:04:00.006-04:00

Today I did another Madie clothing purge..going thru her room and boxing the too small stuff and stashing the fall clothes that may still fit in the fall in boxes in her closet..sigh.
I have quite a few pamper boxes full of clothes..I should get Rubbermaids but that would be alot of boxes to buy when these are free!
She has all these empty hangers now!
We have had more record breaking heat in CT and it sucks..Sometimes there are bursts of thunderstorms and I hold my breath waiting for the cool breeze when I open the door and the air remains so thick and hazy. My mother in law tells me I cant complain since I have central air..lol
Well anyhoo...4 more short weeks of summer school left..its hard to believe its already going by so fast! So far so good days. The teachers in the classroom are all so young plus one guy who helps out..kinda a hippy kid..seriously I thought "he" was a "she" in the lesbian looking category..lol!!
I wish I could say that for seizures..that they have been good :(.3-6 a day sometimes after the 3rd she will give in to nap..but naps have always been tricky to get..Quite frankly I don't feel like talking about seizures. When I ever get a day of zero Ill let you know.:(
Today I suffer my own ailment which I hate.I hate have that need to "just lay down" when I know damn well Im not doing that till after Madie goes to bed! Soo suck it up mama! My bottom left wisdom tooth wants to comeout and play today..the constant ache that buggs me is draining. Along with a crampy you know what time of month..mama is just wanting a glass of wine and mindless TV on my couch. I have a dentist app on Monday and I will get my cleaning and my xrays and my referral for the Oral Surgeon. Ohhhh JOY!
In other news Bummed that I will probably be stuck at home all weekend instead of at the beach house..:(
As much as I try to get away and try to get out there(ya know, into a world without childrean) I am always plagued with the duties of home. Uuuuugh and I hate that so much. I just KNOW that I cannot handle Madie in the heat and that she will not give me a break till she is comfortable. And she cant tell me if she is hot or thirsty or hungry or feeling too hot...which in turn gives her crying fits that I cannot stop. SO I would rather just keep her home and let the crying stay home where she is more content in our freezing meat locker house! She has been that child that I just can't take anywhere these days. Likes the carseat and the process of getting to the destination but once there and if she is not getting whatever in the world she wishes for she goes off. BUT BUT rides in the stroller say thru a shopping center or kholls or the park etc etc are good times. Juuuust keep her movin!
I think sometimes she is frustrated that she cant move. wants to be carried up high, sits like a frog getting those little legs jammed under and falls backwards and sideways, gets herself usually near the edge of the rug to the wooden floor pretty quick with a combo of rolls and pushes..not really crawling per-say I cant explain it. But this kid wants to do it. It just takes FOREVER to progress! As Seizures zap her little head each day. I stand my ground and say that its what is preventing her from moving forward...:( Everything else comes back normal....eh??
Well anyhooo my theory on WHY madie is the way she is could go on and on and on and on SOooo I wont get into that!
Just kinda hangin tight these days. Hubby has been doing WAY too much travel he has been home one week out of the last month and yup...it sucks. I have NO idea how single moms do it. for real.
OH I mean she is great everywhere we go!...
HA HA!
*********
This morning I sit here as Madie screams and refuses to eat for reasons unknown and deleteing chinease comments and some idiot who comments using "wingding" font..get a life loser. And now that Ive said that some 15 year old who likes to read High Times Magazine and play Mario Cart on his super ninetnedo will continue to leave me hacked in comments.....Great.
if only people would use their minds for usefull things...maybe oh...get all these loosers together who like to hack into things and start studying Epilepsy!! wouldnt that be fun!!
*sigh...kid is screamin...gotta go.
Happy Reading.
me

tired. and oh...did I mention tired??

2010-07-12T19:36:00.006-04:00

I reeeally wish I had some news. I wish I could say that Madie did not have 5 seizures today and that she is down to one or even 2... and that the diet is going great and I am hard at work making foods for her to eat and she is gobbling them.
But no.
Nurse from Neuro says she is putting in the Appeal to Insurance again for madies Keto Cal...
I asked her if there was a way I could make my own "bottle" for madie and she says there is a recipie but its nasty and can give kids "liquid poops" uhhh. yeah.
as my father would call it "Di-oh"...lol

Im so burned out. Im just so tired of this heat and being stuck inside with the AC on and madie getting into her moods...although not so bad since school began.. I think it really helps when she is entertained in the mornings...ALSO when she gets home she naaaaaps which is even better.This kid is up at about 7ish and to bed by 9. which ok ok is not too too bad...some do have it worse..
Sadly if it was not for seizures she would never nap. after about number 4 she was spent and finally gave into a nap. This between the hours of say 8ish in the Am to about 2pm...(when she has 4 within that time frame)
*sigh*
Tonight I am just so desperate for her to go to bed..I know I know...she is in a good mood tonight but I am tired I guess. feeling the effects of the husbands constant traveling and being left solo...
oh and hardcore PMSing right now....lol (details details)
I guess that is all for now...eh..going to watch Mindless TV and hit the hay.
Thursday I hope and pray that it will not be too hot so madie and I can go to Cottage in Niantic...please mother nature get rid of this heatwave!! Even a big storm on Sat gave us no relief..
Ill be in touch.
:)

Just a quick update.

2010-07-06T12:32:00.003-04:00

Well here we are folks...what..couple of weeks after our Neuro appointment and we have yet to begin Madies Diet....she is continuing to have 3-who knows seizures a day... and crrrryyyys and crrrrryyyys for either attention or just from being so sleepy and not wanting to nap..or from gas or from teething or from WHOOO KNOWS! Being bored??
The reason being Insurance. they are refusing to cover the Keto-Cal mix for her bottles and well it can cost about 35 a can I am unsure how much we need per bottle and how long a can will last.
Madie is doing great eating her baby foods! I made her some homemade peas and she gobbled them! Mixed a little turkey rice meal in there to help but it did not seem to be needed. loved loved her peas!
It just felt good making food. I KNOW what is in the food I make...and yeah it will be time consuming but with school back in session for summer I can have some time to make a few thigs and freeze em.
Have not made any Keto meals cause well...without her Keto-Cal what is the point when I would still give her Pediasure..ugh.
SOoooOOOo anyhooo
Its been about a 100 in CT lately and this whole week will be a terror of heat. I really dont like the AC crankin all the time but I also am pretty dang blessed to have it!!
Spent some of last weekend at the Beach Cottage..My inlaws just bought a new one and are moving all the things from the old one to the new one...Ohhh man its so nice! More modern and has more of a yard in the back and overlooks a pond with lilly pads and you can hear the "buuuuurrrrrrrrp of frogs" coming from the brush. LOL I have already found my spot under the shade tree in my lawn chair and a cold cold beverage. Theeee Best.
Hope to get back in a week or so with Madie while Miles is going to travel again to Mass...not far but hard to drive back and forth each day when the day begins early...
sigh.
Not much for this week. Summer School has begun for Madie and I am so relived to have her out of the house and enjoy some QUIET without all her meltdowns for reasons unknown..
The Moms from Madies class are also planning a get together at this little BYOB place that supposedly has amazing Cajun food...Jamaican beef jerk and burgers etc...
MMMmmmmm
When school finishes up we are headed to the campgrounds for a few days Im so stoked!
For now...well better go feed grumpy upstairs and work on getting her down for a nap.
Have a good week folks. Ill keep ya posted.\
Me.

comming soon....Ketosis!

2010-06-30T14:37:00.011-04:00

From this morning...lol

Going into this Diet I am skeptical of course. I mean we have tried about oh 8 or 9 medications including 2 vitamins..
Madie is 3 and a half and still having seizures. To me its become a way of life. "oh there goes another" "oh lay down madie, Its ok.." "Don't worry folks she is OK...she does em eeeevery day" I kinda at times just blow em off. Yes its heartbreaking and i am torn up inside each time I see her have a seizure wondering if each time she gets zapped that her brain is becoming more damaged and things that she is trying to do are beging told "ohhhh no we dont want you doing that...too much learning" ZAP. If I broke down each time Id be a wreck!! Oh wait, been there done that.(whew)
Milestones are a dream of the past. for real folks I just assume if madie will do whatever it is she is supposed to do she will do it on her terms. Of course my biggest concerns are weather she will have purposeful use of her limbs...hands, legs, arms, ya know able to coordinate them for moving around. She is a great grasper of her toys and everything goes into her mouth..lol She is great at opening her mouth for her food (although not grasping the whole chewing thing) when I am feeding her (that is new the past few weeks) she is still an expert sitter and gets mad at times when you lay her down she gets right up to sit! haha someday..someday...maybe? I am ready for it! bring on the babyproofing!! Oh and the giggles...oh man. Belly farts and funny noises...even a small "pssst" in her ear will set her into giggles..she loves to bounce and be flipped upside down "movement games" swings and vibrating toys are a fav too. Loves her OT sessions when they swing her on the platform swing.
But I love madie for who madie is. and well,Its frustrating and heartbreaking when I see other little girls with their mamas at the store or at lunch or even at school running and giggling with their peers... its how she was brought to me. Seizures and Delays and sweet giggles and pigtails and crys when I brush her curls and always wanting to be held up high and loves bouncing and walks in her stroller and sitting in the grass...
Just My Madie. Wanting lots of attention these days! gets bored just playing at her noisy box! haha although she still loves her krinkle papers and her loofas that hang from it. :)
I would say about 2-6 seizures a day. Its so unpredictable! Sometimes I think that if we spend a day say poking around town and running errands I see LESS..as opposed to being cooped up inside on a hazy hot day or rainy cold day...hmmm dunno.
She sure has her moments of course...MELTDOWNS and Tantrums I call em! If she is not getting what she wishes she is MAD. sometimes unconsolable! Just cant wait till that turns into a say 7 year old!
She is getting big too...and "lugging" her around is getting harder for sure. Maybe as her body gets bigger she will try more to move...we can only see..
I sure dont know how I will lug a 7 year old around! may need to hire some muscle for that! or get my bum to the GYM! LOL
SO anyhoooo
Keto Diet...another step in this battle to stop seizures..sigh..
Dietician was all kinds of excited and I told her that I just wasnt..I mean we have tried so much...and a DIET?? Well "ok" lets give it a whirl! ONE more down!
Still waiting for Madies Urine test to come back before we can start and that is my fault for not remebering to do the test sooner...but after that we can get started.
I was disapointed that they did not have more of a plan for madies meals etc etc...seemed just like the first meeting of discussion..
She said that it will take a couple weeks to get her body into the diet and then they like to give it a couple months...and if we DO see at least a reduction in seizures then we would be on it for about a year. AND if we DID see NO seizures then we could actually begin to get her off her med!
Kinda Far fetched I know. But this is what I was told. and I am NOT getting all crazy about being med free....how amazing would that be though??? Kinda sorta amazing.
Well anyhoo...I got a crying kid in the next room with a present in her diaper..
Ohhhh The Joys. Maybe a good walk today...DANG its gorgeous! The first time in 2 weeks I can say that I am not quite ready to open the windows cause its too chilly!

Hugs
me
OH two full unopened cans of DUOCAL up for grabs! eh?? eh?? or else I will give them to the kids in the GI unit at the Hospital...its like 60 something bucks worth of powdered GOLD! LOL

get what i wish!!

2010-06-24T14:36:00.002-04:00

Its Official that Madie is super sensitive to changes in temperature..
It was about 90 and humid at the cottage yesterday into today...madie cried about 65 percent of the time..refusing to eat, nap, sit with me, sit on her blanket...oh it was a mess. She did get in a bottle before bed with her medicine but other than her breakfast..nothing. wanted to be carried and pushed in stroller..even then that was a temporary fix for her mood. just crying for whooo knows why!
I gave her tylenol when the TV got so loud and others were putting on headphones or going to the beach...
I had packed plenty for 2 nights but after this mornings meltdown and getting up at 545 am I was spent. I wanted AC and I wanted Madie to calm down. I let her snuggle with my pillow in the car..lol I wish I had a picture of how cute she looked sleeping..
Before we left she ate another bottle making it number 3 and when we got home about an hour later she ate another bottle! I just dont understand how she can go like 3 days maybe eating...2 bottles and a few bites of food and then next thing you know ya cant keep up! crying and crying for food! and eating like 2 jars a day!! These bumps in the road get me so nervous about beginning the Keto diet..what about those days where she just refuses? Shes not constipated Ill tell ya that!
I am so excited to say that Madie is only on one medicine now!! V.Acid 3 1/2 ml twice daily. Seizures have been..well not any worse..2-4 or 5 a day...today she waited till nearly 3 to have her first one which is unusual for her!!
Something sure clicks in her lil brain as she is very demanding of me lately for sure.. scccreaming till she gets whatever it is she wishes for..and 80-95% of the time I have nooo clue!
I remember awhile back..Oct 08 I think when we began V.Acid and we were patient for a month er so and by thanksgiving we were asking each other if we'd "seen a seizure"..that soon turned into drop seizures...
I am at ease that we do not have to stop her medicine when we begin the diet..I was worried about that. I also fear she will not get all her dose when we switch to pill form she is a very messy eater!
A couple more weeks till Summer School starts for 6 weeks!! then we are off to go camping! Im so stoked!
Well I will blog again next week after our Keto Diet appointment :) the 30th cant come soon enough!!
Jamie

Beach Fun

2010-06-21T11:30:00.006-04:00

It makes me want to cry that the oil is continuing to spill in the gulf right now...our beautyful beaches...I love ocean life and the beach...I just keep my hope high that it stops soon...and cleanup that will take a long long time but for god sakes...stop the flow!! :( :(

Diva on the Beach with mamas sunglasses....LOL

mama! My tootsies are gettin hot!! :D
Ohhh what a lovely day at the beach! the weather was on our side for sure! Hoping to get back out there the day after tomorrow! for maybe a couple nights...oh its such a great place!
So blessed to have such a wonderfull beach getaway :) I sure know grandpa is dying to take the boat out for the first sail of the season!
Miles is still gone out in Mississippi workin on the beaches and testing soil and water for oil...Its been tough having him gone a week already and I think we may be going another week too...:(
Had Madisons great Grandmas 80th Birthday party yesterday and what a great turnout it was! Madie was NOT in the party mode she cried about 75% of the time...I wanted so badly to hang out and talk with everyone but she was not having it...then when she had a seizure that was really the end of her...
There was AC in the house so it was not too hot although I was sweating just from being stressed!! crrrrazy! I think the heat does get to madie on certain days and she gets super grumpy being inside all the time wanting to get out for the fresh air.
We have been keeping busy as I drag her all over..lol She likes car rides and is pretty happy in her stroller as well keep on moving and moving try to fill my days so I am not home missing hubby too much or on "seizure watch" thats depressing!!
Tomorrow this mama is going out with the moms from madies school for some Thai Food at this small family owned DEEELICIOUS place for some dinner and "sodas" LOL I am so looking forward!
Other than that June 30th cannot come soon enough...dont think seizures have gotten any worse or any better lately...about 2-5 a day so far..sometimes I dont see them but when her mood changes I just know when she was hit...poor boo boo.
Got My hubbys Guitar re-strung for him for fathers day and some new socks...LOL
Hope everyone is healthy and happy and enjoy the week.
Reeeeelax, kick back. have that guilty glass of wine and get a good book and say the hell with it...even for only a few minutes..:)

Me

flyin solo and keeping busy :)

2010-06-16T09:58:00.006-04:00

Yesterday Madison and I decided to take an adventure. Well it was only about 20-25 minutes away in West Hartford. Among all these big beautyful homes..where each home looks different and has probably been around for 40-100 years! sure looked that way anyhoo...lol
We drove to a park called Elizabeth Park where they have wonderfull rose gardens! walking paths to walk on and even places where people have gotten married!

Well my stubborn model and sllowly dying camera battery did not stop me from getting some beautyful pictures!
Seizures have been little demons lately...some days there will be 2 and some days we can have days like today where I am counting 5! *sigh* June 30th cant come soon enough!!(keto diet begins)
Its just me and my smallfry this week...hubster is on the missisippi shores sampling water and sand and noting any oil covered animals..though may have not spread there yet...Its 10 long days of work then hopefully if things go his way 10 days off paid! he'll be getting like doublethe pay which is much needed right now..
I guess I'm really trying to keep busy with Madie..hints our trip to a place we'd never been :) The smell of roses was in every breeze it was so pretty! Almost went to sit under the trees in the shade but we had no blanket and the tree roots were hard on the umbrella maclaren stroller...LOL

Kiddo was super overtired after a day of doing errands and in and out of the car..we even went to grandmas for dinner. (not best idea)
This morning a funny thing happended..well corny..
Went into garage to get my water bottle from the car (for our stroll) and just as I was closing the car door to go back out there was a snake in the corner by the garage door...lol oh my god I ran like that little fella was chasing me! I threw (with bad aim) crumbled pices of newspaper at the thing to go..lol eventually I looked back and he had left. man, the wildlife in our yard!!
Loaded little person up and we headed to tj maxx and got some frames for madies new pictures and took a walk thru neighborhood..sun went down and cooler air came thru which was nice! It sure can't be as hot as Mississippi right now..I think Miles said heat index was 108 at one point yesterday!

Tomorrow Madie and I head to cottage for a night hopefully get to beach and get some more pictures :) planning on bringing the kiddie pool too! Madie got a new suit with watermelons on it..hee hee :) Maybe we can make dinner or order Pizza and play Apples to Apples...lol
Saturday we celebrate Madies great grandmas 80th birthday too!!
Hubby may be home in a week..:(! keepin busy!
Tonight, chillaxin with a movie and some thai food or pasta..have not decided.
Rambler..
out.
:)

Ketogenic Diet!

2010-06-09T15:50:00.004-04:00

Headed out with Madies grandma to Hartford this morning to meet with the Dietitian about putting Madie on the DIET!
Madie ended up falling asleep in her stroller and snored most of the time we were there which was nice so we could all talk.
With Madie still on bottles it really made things quite easy with the KetoCal mix and a couple meals of food each day. I felt pretty confident that I could do it.
Those of you unfamiliar with this Diet well its a diet that is FATS and lots of them. NO sugar/carbs has the body make more ketones which are seizure "helpers" we would have to test her pee here and there with those fun little sticks (brings me back to the ACTH days when we tested her for glucose in her urine..) to test her ketones.
My mother in law was sold on it. madie will try the diet for a month and we will see where we are at with seizures..the goal really is OFF meds and FREE of seizures...now would that happen...well maybe I should get a little more realistic in our goals..
I am relived that we are not going to just take her off her meds untill we know the diet works I was getting nervous that they would do that..but no.
I am also relieved that we do not need to do the whole day of fasting at the hospital we wil l just wein her off her Pediasure one bottle at a time till we have her going on just the Keto-Cal and small keto meals.
The Keto Cal out of pocket can cost 35 bucks a can!! Ok so before we all go OH NO jamie! You have to PAY for that???
NO we do not. or at least that is the goal to have this all paid for! even a multi-vitamin for madie too! which will be a scooby-doo sugar free multi..:) We will also change form of the Depakine to the tabs or sprinkles so that too can be sugar free. I am pretty used to having a mini science lab each time I feed madie so its not new to me...
We will find small things like Tylenol and Laxatives and gas meds...all the usual things I may use here and there for madie in sugar free forms..:) Kinda cool.
It was awesome to go in there and know what I was talking about too! After reading My book on the keto Diet...(thanks sooooo much Cami's mom) I was chock full of knowledge and asking great questions. This Particular keto diet for madie will be a modified form with more food choices and no scales to weigh things but there will be alot of measuring cups.(I may be able to find some ones with alot of extra measurements at one of those chef stores...hmm ill have to see if mine are good enough.
SO on June 30th we go back to meet with Beth the Dietitians and Nurse Deb from Nuero and get the stuff we need to get the ball rollin.
YEAH!
At least I can say its another thing we have tried in the gruesome battle with seizures. Not really much else to report I guess.
last day of school for madie is FRI for her 3 week summer break and then the beginning of summer school :)
OMG my baby girl is 41 inches long!! and allllmost 30 pounds!! ha! 90th percentile in her height and 5 percentile in her weight! oh kiddo..I can only laugh.

Big Mind Fart

2010-06-03T12:04:00.007-04:00

Where do I begin..............
Well its been a week for sure.

I think about getting back into the work force...really I do..To care for Madie and the house and the living things and the uh uh uh uh talk about mental breakdown. all for some money. just to have. f-ing sucks to be blunt. Work was for me at one point just to get out and meet people fudge my way thru a day a target and have some money in my pocket...Turned out to be more stressful that FUN...

I am a good mom to all my kids and tell me otherwise and you are not someone I want to know...this includes my cat! she is living and dependant on me..she was going to die! and well if it meant NOT spending(unexpected) 800 bucks on her than that would have been the choice to just let her go....I (beyond husbands wishes) spent ALOT of money to save my cat...she is fine. she will live. Doctor wants to continue more anti-biotic but I feel its not nessesary she is back to her pesky self..(so I have not picked them up)we are just out of the last batch...after 10 days.. Is it really necessary for MORE??....I have huge guilt for even saving her...Hubby has made it very clear that I am not to spend anymore on the cat.(that is a conversation best left in hell)

Madie had a tough day at school today she was not about to go to PT or cooperate for that matter she was up at 6am which is early for her the past few days. going to bed at nearly 10 last night was rough too...
even when I am away and I try to sleep in and forget about being a mom for a DAY I still am unable to relax and take a load off and just enjoy..feeling like I just need to be close by Madie. wearing myself thin..(not literally) but mentally.
Maybe I am just feeling sad about that..I just hate to hear about tough days and seizures and crying and not liking her therapies...
I love the days when its nice outside and I can go sit outside on the deck and read a book or lay in the sun and have a cold ice tea or glass of wine and close my eyes and block out all the noises except for the birds and the frogs.
I would love to take a camping trip sooner than later... just get away..cook food and make a fire..great stuff. *sigh* not asking for an Island getaway here! (although Ill take one) Its something I am looking forward to this summer we had so much fun last year....and I want to make a tradition out of it.
To say that I long for some Hubby and Me time is the biggest understatement of my life right now...*sigh. Some Year.....
OH OH and while I am daydreaming...
Chiropractor Dad at Madies school came to me and said that he would love to see madie and give her an adjustment he claims that this type of thing has worked miracles...yeah maybe for my stiff neck...but for SEIZURES??? has anyone heard of such a thing??
He gave me his card and said whenever I am ready to call him.
Baby Girl is passed out next to me on her blanket after a doozy of a seizure...how can I not call??...just out of pure desperation??? ugh. got mixed opinions on it.
Now I know he is meaning well...and I tell him that he just doesn't know what its like to have a child with hard to control seizures where the doctors have failed with numerous medications and seeing your child unable to run and play with her peers...I was ready to cry! and I hate when I get that way! Also telling him of all the tests we have had that come back normal...
Then he goes into asking me if I think Vacinations caused Madie to be the way she is...OMG...how can I go into that conversation??? I tell him that I get Madie her vacinations because she needs them and that is that. all kids get them and well its a touchy subject..not saying I like them but just saying that I go with them. grin and bear it all in the name of Madie not getting sick...tricky stuff right there..Madiie is current on her shots...if she was not she would not be able to attend school as well..sigh...
There can be pretty heated debates on Vaccinations and I suppose its the parents choice..we delayed a few due to when she was on ACTH but other than that...eh...

Soooooo I guess in a nutshell those are my thoughts right now. I always feel a weight off my back when I spit out a new blog...err fart one out. Just dang satisfying.without the bad smell. ;)

A mama and her Kids (one kitty)

2010-05-26T16:46:00.005-04:00

Madie loves her Tub Tub time!

loves to have water poured on her hands..lol puts her hands out for mama to pour..

after many times of splashing her hands with her saying splash splash...she gets it! claps her little hands together splashing!

So grateful to Birth to Three for getting us this seat! she loves how she has more room to touch water and move her legs as opposed to the other ring seat we used before..Its bulky but manages to fit in linen closet..
Ok sooooo
Updates..
Latest genetic testing for hubby and I came back as follows..(dont get too excited) I was negative for the differences they saw in Madie but Hubby positive for them...but it means nothing cause Miles doesnt have an sort of disabilities..so what the differences are is just what makes her madie..just gives her her her character not the disabilities...
SO she is simply disabled because she has seizures????
ugh.maybe so...
In Medication news after I explained to the Nurse at CCMC that I wanted Madie OFF this Canada drug that made her miserable I STILL had them tell me to "just lower it" Nope, sorry we are done! She is on a half of a half a pill at night and I guess soon I will do that every other night and then be finished.
had to be aggressive with what I wanted on that one.
Today I have seen 3 tonics...one suspicious...I heard her fall but did not see it per say...so I Did in fact SEE 2...which is pretty good considering..but its still only 5pm may see another...(nope make that a solid 3...just went over...)
Mood has been a MUCH better turnaround! OMG even just last night she was SO giggly and so happy and interactive holding onto mama and grabbing my face and laughing and wanting to be flipped upside down when she goes "upp upp pup pup ppp". I wanted to bottle her up just that way!
I just want her on the least ammount of medicine possible with NO MORE seizures!!gah!
In other Drama..
Now being a mom is tough with a child who has special needs and its even tougher when you have a 10 year old cat whom is like your "other child" and that other child is sick. BUT the human child must come first and she is demanding of alot of my time...
My Kitty Magic was wallowing around the house for a couple days and spend all of thurs and fri in her kitty bed...a rare ocasion for her since it was gorgeous outside and she would be the first meeeowing to get outside or busting a screen thru the window...
Finally on Sat I brought her to the vet and it was bad. X-rays looked clean aside from a small kidney stone that may pass over time...and it was the blood work (and the bill) that knocked me out of the park....
White Blood cells were SO low her body was trying to fight an infection of sorts and was loosing..
Now Zoey knows all about White Blood cells in a very scary way and triumped her way thru...a whole other story...
But when I heard that the Big C word came into my head and I was prepared (as well I as I could be) to put Magic down...
Well we put her on Anti-biotics and went in today for a follow up and she is doing better...she still had a bad fever but we gave her an anti-inflamatory and some fluids and they gave me some canned food to feed her and she finally gobbled that up..whew.
A mama and her Kids...
Also went to Jersey for a wedding shower as well. I was so exhausted and worried about my kids and it was SO HOT and my nice new shirt was soaked thru...I get a call from Hubby saying madie is giving him a hard time and I just loose it. Spent night at my cousins place and we ordered some Pizza and the world was good. :)
I guess thats it...Hubby needs computer now and I gotta get the cats temp.(Hubby refuses)
Have a good weekend...stay cool folks its a hot one! almost a 100 in CT today!! shoo wee!
((hugs))

where we are...

2010-05-20T10:07:00.006-04:00

may of 2009..aww what a sweetpea!
Well folks Ill get right to the point to what is going on! woo hoo!
Yesterday was rough day for seizures..3 within 3 hours of wakening! she slept alot and was pretty foul most of the day..I was heart broken. I felt so stumped.
SO this is kinda how we are where we are...lol if that makes sense...

We had began a drug from Canada called Clobazam. the day we began it I remember well. We had planned a picnic with friends and family that day and all the food was made and people were just arriving when she melted down. just tears and tears and I wasn't even ready to bring the mac salad out yet!
The mood has been foul since day one. I just never know when she will burst into tears and sometimes there is no consoling her we just put her in her bed and let her cry it out. Now this has gotten slightly better since we complained about it and were able to lower the dose to a half of a half of a pill.. I tiny crumb of a pill.
Well Clobazam cured the Drop seizures she was having and so we began to lower and lower the banzel she is on as well..
Now we see Tonics...just a simple stiffening that she holds onto for a few seconds and then plops. Ok WTF??
SO they (doctor) tells us to go UP on the Valproric Acid (another drug madie has been on since Oct 08 and rid her of grand maul seizures)
Since V.Acid is good at controlling tonic seizures we go with it..
In the meantime as of now her doses are as followed.
AM- half of a half of 10mg Clobazam, 3.5Ml of V.Acid and no banzel.
PM- half of a 10mg tab of Clobazam, 3.5ML of V.Acid and half a banzel(100mg)

I feel like she was a happier kid when she was having drop seizures..at least those diddnt knock her out to sleep!! ugh.
Go back UP on Banzel to where were were before we began Clobazam?? Dont really want to do that!..Its not like that drug helped the drop seizures....
Do you think that the Clobazam is taking away some of the effectiveness of the V.Acid??? is that possible???
Called Nuero yesterday and have heard nothing. if I hear nothing today I am going to get her off Clobazam myself..I feel like I have done tons of medication weins....
The days at school have been....well.
"madison has been crying" madison fell asleep" madison was very fussy and hard to console" "madie cried in the stander"
Uuuuuuugh cant take anymore!! They Absolutely LOVE her at school and its not fair that she has to feel so miserable when there is all kinds of fun things they are trying to show her and do with her! :( :(! breaks my heart.
So I guess that is where we are at folks.
Weekend is comming and awesome weather is in the forecast! Sunday I am driving to New Jersey about 2.5 hours away for my cousins wedding shower and staying overnight at her sisters (my other cousins) house so I can have a girls night out...

OMG I forgot!!1 Meeeting with Dietician at hospital about the possibilities of the Keto Diet...JUNE 9th!!!

A few random Pictures

2010-05-15T20:14:00.005-04:00

Been Gorgeous outside today..
Saw ONLY ONE seizure!!!! A little demanding of mamas attention with tears and arms in the air to be picked up...but otherwise a great day! I am trying to feed her later in the evening only because she does not get her meds sometimes till 730 in the AM...
Forget she has seizures and enjoy some cutie patootie :)!!