Happy New Year :)
This was Dec last year..its hard to believe a year already since this Christmas card picture :) still in her bumbo seat...she has come leaps...but maybe not bounds yet..lol
To recap the year..whew...dunno. the great thing about this time last year was madie was completely seizure free..it breaks my heart that she is STILL dealing with her jerks and drops now...when the seizures go away its never far in my mind that they will return...seems they always do..all we hear from our doctor is that "unfortunately she is in the hard to control category"
OH what a SHOCKER!! Ugh. so I'm just supposed to take that and just move on.."oh she has seizures every day...just ignore her"
NO WAY!
OK positive thinking!! Its a new year ahead..it terrifies me and excites me at the same time. The fears of the unknown and with hopes that my madie will reach new milestones and get some pounds on her little 30 pound self..(although in my selfish mind I don't want to let go of those tiney lil toes that I love to squeeze and kiss so much. lol.) and build those muscles and someday stand on her own..Am I pushing my expectations?
Yup as much as I hate to say it my little girl is growing...she will be FOUR this year! I cant imagine it! I certainly never imagined having a four year old like madie when I was pregnant and putting together all her new baby gear and washing her little clothes...
She is very demanding of attention lately..lots of crying to be held and fussing just to fuss..then when you take her in your arms and carry her she is fine.Even giggling and smiling away with her funny noises... Much more aware of her surroundings and what she wishes for!
I am certainly Madies free taxi! LOL
She continues to sit well..at times still only falling when she has an episode we call them...but happy most of the times..
Teething pain can be tough sometimes but a little tylenol and a 30 min snooze usually cures that. The meltdowns are just unconsolable.
OMG I have to mention...
NAPS? what are those? Naps are getting shorter as well...I think its the age when kids began to give up their naps..making my day pretty long indeed. but in the upside she is down to bed by 815pm. If only our kids could tell us huh?? dang.
Well anyhoo...its snowing like crazy in Ct this morning and we spend the day being lazy...watching the snow and maybe making some cookies..makes me wanna make cookies when it snows...hahaha "on the rd to weight loss" is my motto!

Well I hope everyone has a safe and healthy new year. No plans for the night tonight. still getting over a yucky head cold..maybe a pay-per-veiw movie and a pizza :)
Please keep sweet Reagan in your prayers and or thoughts that she feels better and that these dang doctors can figure something out to help her out :(!!
Ever wonder how lil Austin is doing as well and that santa treated him well this christmas.
(((hugs mamas)))
Me.

its the most wonderfull time of the year..

Well Christmas has come and gone and I am exhasted! Sportion a lovely head cold to go with all my holiday hangovers...lol.
Fun was had by all. So wonderfull to see my family! How I wish we all lived in the same town!Its real tough that my grandma doesnt get to see madie as much as she would like to...she was so proud of madie for the things she has been doing..eating her foods and sitting etc etc. It was a thrill to just sit madie in the middle with her wrapping paper collection..lol
Everyone was all kisses and hugs for my madie and chock full of adorable new outfits, toys and story books. This mama made out pretty well as well! My favorite gifts were my new cell phone and my new winter coat.:) Yup, I have not had a cell phone for years! OR a new winter coat! (thank you to my mother in law)
Hubby also got me the movie "UP" which I cannot rant and rave about more! if you dont have it SO go get it :D Its great.
I am weary from this whole christmas...it was a long couple days driving back and forth to New Jersey and all the festivites..whew.
NOW we relax for a few days and in about a week we head to Detroit with our madie. I want it to be over already. Am I crazy for going?? I just know that something has to give with her "drops" they are just not quitting. I give Banzel some good credit I suppose but on a higher dose the kid just wont eat her food...takes that appetite right away. UGH. I told the neuro that and he did not seem concerned...DOES HE UNDERSTAND THAT SHE IS ALREADY UNDERWEIGHT??? UGH.
So far on the dose she is on now she has been OK...drops are more in the AM but then kinda taper off and randomly appear thru the day... I just hope that Dr.Seizure can give us some insight to these things. I go in with no expectations...maybe a few...
Madie is super vocal this morning...lol I think she has gotten over her cold and teething hump...Now I get to have the cold...but dont worry I have all my teeth...lol
Its a bitter cold windy morning in CT as we wait for the TV dish guy to come and hook us up with some HD TV and DVR..hubby is sticking around to wait for him and then is off to work for a few hours...
Me? well I trudge thru my cold and do some laundry and try to entertain madie the best I can. She is begginning to resist the naps...or at least give me really short naps. doesnt want to miss a thing. oh my Madie.
(hee hee if I could only record her noises right now)

My Two front teeth

Dear God,
Please give me the strength I need to get thru these holidays...
I dont ask you for much. really. Ok maybe a much smaller butt...but geeze.!
I ask for only a happy child. A child who will nap ON COMAND. who will not break down into overtired meltdowns who will be just the happy go lucky kid I know is in there!!
Take a load off me will ya god.??
Let me breathe. Let me be able to not have to look over my shoulder or leave dinner to deal with a screaming child.
Dear God,
is that too tricky to ask?
All I ask for Christmas is my two front teeth.
Merry Christmas everyone

OK Have to add a PS to this Post...yuppers it was bad day for the toofs! I was and still am at wits end with the meltdowns...she is hurting her poor little fingers biting them :( I am armed with the Orajel and tylenol and some blankies...
Tomorrow we are off to Christmas Eve Dinner at my inlaws. I am making some Apple Pie for Desert :P
ALL IS OK Im not going to pull my eyebrows out or anything!
Merry Christmas :)

Not the best week Madie-San...
I think she is slowly starting to feel herslef again...we shall see.
She was a handfull for her preschool teachers..crying and not having her stander sessions and wanting to sleep..red faced and drooly. Having morning meltdowns.. Only on Thursday night did I have to resort to the childreans tylenol to get her to simply CALM down her tears...:( I gave her a little more on Friday morning and her day was a little better at school so they tell me.
I call these times "teething humps" lets get OVER the hump as the toof comes in just a little more...then we wait for the next hump. WILL THESE TEETH EVER COME IN??? gawd!
Well one day of school next week and its an early day then she is off for what seems like a decade. Hubby will be off from work for 2 weeks as well. I dunno if all this vacation time will drive us crazy or bring us joy. Extra Dishes, Extra laundry, lots of continuous picking up...I guess Its not much of a vacation for me...but it will be kinda nice to have everyone home at the same time. I am lookimg forward to Christmas weekend. It will sure be a busy one. Family Party in CT with big dinner and seeing all my Brotha in laws and sister in law and of course grandma and grampa :)
THEN its off to Jersey Shore for the Voegler party. A 3 hour flat drive we will spend the night this year hoping that it will be easier on madie so she is not in the car as much.
Initally I wanted to drive down the day before and get a fresh start the day of the party but we have changed that to driving the morning of the party...get settled and "gussy up" and spend the night after the party. I think it will work out great.
MAdie is a challenge at times...ONLY due to lack of naps..but we hope she will snooze when we get there or in the car. :)
I just have felt so overwhelmed lately...I dunno various reasons I guess...I am still stumped for 3 presents and I am about to just give up. I have run out of chritsmas cards and have yet to send out madies great grandma a card! OF ALL PEOPLE! GAH!
Madie has been OK..she is just being madie. She is funny as she becomes mor aware of herself. Like oh...Ill be saying her name in a funny voice and she giggles and squirms like she just knows Im comming with the tickle kisses...LOL she is still sitting very well and at times looks like she just wants to get up! Still will not use those arms to get herslef up.
Lowered Banzel in the AM to 200mg and kept the nightime dose the same at 300mg..I duuno anymore...I was worried cause she just was not eating! I had her eating 3 jars a day!! nope. she was not hungry..
BUT was it teeting? who knows!
As for drops...well they are what they are...we deal with them in halos of pillows and I guess its all we can do...they just wont go away. I am run down and beat up from trying to fight the seizures...I just go with it....*sigh*
I mentioned awhile back that we were workin on getting back into Detroit...Well we are in as of Jan 6th. More on that later I suppose. Maybe I still do have some fight left in me over seizures eh? :)

Hearing Test and Nuero Follow up

10:15 am. Im heading out to Madies hearing test in town...well one town over. I get there at our 10:30 sheduled time. The gal at the desk I remember from feeding therapy that I dropped out of...an overly cheerfull gal..
I tell her I am here with Madison for her hearing test for 10:30. she looks at me funny and looks in her computer and tells me that we are schedueled for the Weathersfield branch... UM..NOT driving to weathersfield and NOT thrilled.
"Oh (hee hee) someone must have changed it"
She scurried off and comes back and says that since we have a neuro apt at CCMC (ct childreans medical center Hartford hospital) that we can go there and get a hearing test instead..."ya know as long as we are there"
Well Nuero is not till 1 and its almost 11...I needed an hour to get there and park my car and check in at the desk...
She says that they can take us at 230 in Hartford.
I reluctantly accept.knowing that I may have an hour to kill at the hospital between apointments.,..hoping that one bottle is enough for madie..
At that point I had an hour to kill.

(bought madie a new winter coat..she has a ton but they are all huge)
I decided to go to Panera Bread and have some lunch.
I found a cozy seat by the fire place in the middle of the room and at that point madie was zonked out in her stroller..
An hour later and a few chapters in my book we were off.. I was so relaxed I has no motivation to go.
We get to Hartford 30 min too early... but we check in and crash in the waiting area. Madie begins to cry so I get a bottle made and she refuses...she ends up falling asleep in my lap.
When we are called in she is awake and happy...I give her a pice of the exam table paper to much on and she is content. not for long...
I end up getting a bottle down the hatch before the doctor comes in so she is full now. but still looking sleepy.
Its now about 130 and she had certainly had enough of this place
She cried alot while the doctor and I talked and I was growing sweaty and frustraited when I was trying to gather my thoughts and concerns for the doc we only get to see and talk to every 4 months!
He agreed that we should run some genetic tests on madie including Retts...Now he is not concerned that she HAS retts but the hand mouthing is just insane! I agreed. There are also a few other smaller tests we can test her for...uncertain what they test for but its a range of things. Dunno if insurace will cover it due to the fact that it can cost thousands for one test...So he was going to run it by insurance and see..to be continued on that one...
No change in meds...he did not seem too concerned about madie not eating AS much as she did on her banzel....stupid banzel...I had this kid eating 3 jars of food!! ANYHOOOOO... She has tolerated the med pretty well.. I told him that at times she doesnt seem as motivated to sit as she was so much before..I mean she still CAN sit but sometimes gets sleepy and just wants to lay down and make noises...
Not really much to tell about the drugs...they suck.
No Tonic Clonic Seizures in over a YEAR!!! GO DEPAKINE!!
Drop seizures have continued...not at the alarming rate they USED to be...but by no means cured.....VERY frustraiting!

Well with an appt made for 4 months from now we were done...madie was tired, I was tired...and we still had 40 minutes till hearing test.
Back to another waiting room. I sat with madie and she was crying and then I put her back in her stroller with her blankee that fell on the wet ground outside..(ugh) and she calm again.
They took us in pretty quick and it was not the 40 minute wait I expected...
WELL this test was a very simple one...for people who are NOT hyper sensitive about their ears being bugged..
It was a small plastic thing attached to a tube that had wires inside it that hooked up to this tiney box thing that hooked up to a computer...I guess measures vibrations.
Well one second of puting this itty bitty thing in her ear and that was that....crying so hard she was growling...angry cry. BUT the only way to get the test is if she quiets down enough to get a reading...OH yeah...easy.
Well we did get about 20 seconds of quiet out of her for each ear..SUCCESS.
OH man I was SO outta there.
Nope not yet.
Well the easier part came when we went into a creepy sound proof room and the guy sat behind some two way glass and said "hoo hoo Madison" "Over here" "Im over here" and then things above the speakers with creepy animals lit up and made noise...
OMG It took all my will power not to laugh.
She turned in the direction of the light up stuff but it was not the best test ever... then he said we could just go by what we had and it was all good
MY KID CAN HEAR!
Now we were SO outta there.
We got home about 330 and I changed Madie (I had forgotten wipes) and fed her a bottle and some oatmeal and she was happy to be home.
Got her to bed by 8...whew.
Teething has not been great eaither...her cheeks were bright red yesterday as well...NOT helping.
SO that was the adventure. It was so great to be home...Madie watched some shows with her dad and I caught this picture...she has been so good cute when she "hangs on"

Well today I make some cookies and do some more laundry. Jealous? I knew it!

Hugs
me

Great Preschool Day, Christmas Trees, and Apple Pies.

I am so proud of my big girl today! she had a great day at preschool today and was full of vocalizations and stood in her stander for 30 minutes! there are wheels on the stander and the teacher wheels her thru the gym or the classroom or does music or whatever to entertain her while she works her muscles at the same time.
Will my madie ever stand on her own? Will she ever know how to use her arms to get herself up? Well we are all working on that goal...and we take one day at a time. For her to tolerate that stander as long as she did is great to me!
She was up last night for reasons unknown crying about 2ish in the AM...I was sooo tired..she was sitting in her crib and I layed her back down and covered her with her blankie and she went back to sleep...strange.. The two of us were not up till 8am! Oh sleep glorious sleep! But that meant that I had an hour to get her ready and fed for school..rush rush...lol but she ate her oatmeal and bottle and we bundled her up good and we were off!
Its been so cold in CT..we had a yucky mixed storm yesterday that dropped a few inches of all kinds of yuck..It ended up being a snow day for madie..and she just knew it! woke all kinds of loud and happy...lol
Today I make Apple Pie and do laundry that seems to never end...Madie has granted me a nearly 2 hour nap I feel like I have had the day off!! Can get WAY to used to that!
Well Christmas approaches and I tell ya folks we are tapped out! I am SO done spending money...on food, on gift cards, on presents, its just draining..
No Tree this year...I guess we are a no go for that...I mean we are half way to Christmas why bother now...
Im sad to not see a tree in the window..the one last year was so pretty! Just another "low budget Christmas" what the heck is a tree anyhoo?? Oh well. I will not complain as I am not helping to afford the dang thing.
In the meantime I have been in hog heaven making pies and cakes...oh man it smells better than any apple cinnamon candle I tell ya...
As I try to eat better....LOL what can ya do eh??
Well on that note I hear a little person making noise and my hunch is she will be hungry :)
I hope everyone is doing well..Keep Sweet Reagan in your prayers...she is going thru some tough tummy stuff....and no one seems to know just WHY!
OH and a shout out to Austins mom hiding in her cave...hello? hello? where are you? LOL
This weekend we head to good friend of ours' place for a christmas party of sorts..games and yummy eats and maybe some christmas music..lol
Well I guess that is enough out of me...comming madie!! eek!
Just sent out like 30 Christmas cards..and realized I may have forgotten Madies great grandma! OF All people!! gettin there gettin there...lol
Hugs mamas
and dads too
Me.

good eye exams, holidays, preschool, and snow.YUP all in one!!

Well Kiddies, I guess I have a few things to report.
Madison had her second eye doctor appt ever a few days ago..the first was when she was on ACTH at 11 months! (checking for any signs of pressure in the eye...)
Well her vision is fine and her eyes looked good. We sat for almost an hour while the drops dialiated her eyes and watched Monsters Inc..lol She fell asleep in her stroller for a bit so I just read my book..everything went so smoothly..it was just boring..
Doctor will see her in 2 years if nothing changes or she doesnt hurt her eye or anything crazy like that..
Holidays are aproaching and friends are having partys and family dinners and drives to New Jersey to see my family...whew! comming soon! Before we know it!
I have yet to get the christmas cards out...I went to Target to get Photo paper for my lil printer and they dont sell it anymore! HUH? So I may try Best Buy and if they dont have it well...maybe I can shutterbug.com them...gets pricey that way paying for individual cards...but we shall see.
Preschool has been going well. Madie has her days when she doesnt wanna do anything they ask of her but it pushes her...they have her in the stander every day now.. we really want to get those muscles strong! She does great with her OT..that is the fun stuff...swings and vibrating toys and kooosh! she loves her kooshes...lol I cant find those dang things anywhere! dont they sell them anymore?? (note to santa..lol) WOuldnt it be cool to have a huge pit full of kooshes! LOL

Today snow is in the forcast for connecticut...wed we had temps almost reaching 70! and well...the weather is posting alerts that are so wimpy.....2-4 inches...PPFT! (just have to laugh about that)
ANyhoooo.....
Last night can I just say that Madie was a bundle of giggles and lovin..she was up till nearly 10 pm (with the help of a 3pm nap!) and still up at 630am!
Sometimes I just dont understand why she is so much more active at night..whereas in the morning she is kinda sleepy and grumy at times and not so full of energy...meds kicking in? dunno...does she sleep ALL night? Dunno...its my hunch. she very well may be waking in the night and just entertaining herself while we sleep...
Her Drop seizures are still present but I dunno if those really effect her sleep..but maybe they do..
The Banzel has really taken an edge off for sure but not curing anything by no means...I wish we did not have to have her on it at all...but we all know that drill. Doctor wanted a tab and a half in AM and in PM..making a total 600mg a day..Well I am going with a tab and half just at night...and keeping just a tab in the AM...TOO MUCH! and she is fine. tried the full dose for a few days and she was..hazy and grumpy...warm...just "off" Too much. madie still gets sleepy about 2 hours after waking...just dont get it...and she is up all night..happy as can be!
I am some doctor huh? UGH!
Well anyhooooo today we try to get some of the leaves out from under the bushes before this so called HUGE storm hits us and we can get the chritsmas lights up! We still have no tree...I opt for fake ones but the real ones are pretty fun to chop down and smell sooooo good! BUT the needles! OMG who gets to clean those up?? take a guess...
Well I I'm outta here.
Ill blog as the holiday gets closer and post the chritsmas card picture on here when I get a good one...just need a good "setting" for madie's "photo shoot"
lol
Hang in there mamas..and you know who you are!
:D