To be Continued...

What a trying day....an all time high for seizures...ALL caught on tape and EEG.....between the bright lights and the head-dress...whew....to think the last time I was pushing an identical button I was counting her movements in my tummy.....I cried thinking of that nervous time so excited and so scared at the same time....

We head to the NEuro today with my high hopes of maybe putting a label on her type of seizure and finding a NEW medicine that will gain her seizure freedom..... I will blog tonight....To be continues...

ME AGAIN-Continued...7:30pm...

I tell ya....talk about a NERRRVOUS mama going into the appointment today!! evvverything going thru my head about what Dr D was going to say.....I came home from EEG exhausted...Madie was in bed by...7 and I was ready for a "unwind glass of wine"

Where do I begin....Wellll We are no longer dealing with I.S...."she is sure having seizures now" he says....we had to laugh... I kinda knew that anyhoo... "Tonic Seizures" he says...but her weird movements when she slept had me wonderin... nope....half are small tonics and the rest are madie being a weird sleeper...*whew*.....she still took nearly an hour to get into stage 2 sleep...so sooner than later I foresee some fun wake full nights with sleep issues....("cough cough"...cami...lol)

We talked about when she had spasms and that in the very beginning he did tell us that there was a possibility that they could evolve into another type of seizure...that this journey is maybe far from over....he says that to this day Infantile Spasms are still a mystery....if there is no known cause found its just so tough....which is what we went thru....ARE STILL going thru..!! I cant say how long madie had her spasms and I can say there were moments when I saw them and simply though they were "weird" and moved on.....wondering if I took action sooner than madie would have been on the ACTH when she was 7 months!! I had NO CLUE what a spasm was!! I tell ya......*whew* I remember the day when I saw a different kind of seizure...like all of a sudden one day....BOOM...someting different!! I remember calling the doc and UP went the Topamax....up up up UUUUP...nearly 80mgs when we finally stopped that drug!!

Man those spasms!! are by far the things that have left her where she is today..I am convinced her seizures have effected her physical development and her eating habits and her overall development in general!! I know that seizure freedom and a decent diet jammed with nutrition WILL help her.... I know that this drug the Doctor finally recommended could effect her kidneys and her liver and her bone marrow and her....uh....the list goes on....I know this drug is safe...I have SEEN success stories of this drug....I have read great things about this drug..... and we are going to get it filled tomorrow morning and begin 1ml in the AM and PM......

Welcome to Depakote Madison

Whew. I am nervous as all hell (pardon my french) about giving this to my 2 year old..... I was given the choice of that or Lamiktal....(sp?) which worse case can cause a rash.......I thought of trying Lamiktal and adding to the list of shit we have "TRIED ALREADY"....(whew, french lesson...sorry) I am sick of that!! Time for the big guns!!

I sat there and looked at my madie....snuggled in the chair with her grandma...fussing up a storm since I woke her from her nap to drag her out...and thought to myself what else can Madie loose?? WHAT does she have to loose?? SEIZURES???? I began to think WHAT can she GAIN??? for some reason it was one of the hardest choices I have had to make...with giving her ACTH being the first.... I just dont want her to be a zombie.....loosing the small ounce of sparkle I have would be devastating to me..... to not hear her noises...for her to just sleep allllll day.....IF and when this drug works and she is seizure free??? Oh man....the day I feel will never come...after over a year of battleing this.....

We give the drug two weeks and then we get to wein her off her Clonopin and her Zonegran...they want to make sure its in her system...afraid if we begin weing immediately seizures will get bad....he said it could take a few weeks to really know if the drug is working for her...I say in mommy terms...ONE month....still seizing? well.....NEXT........

I could go back in time and tell you all about the drugs we have tried and what happened when we used them and hey if you want me to tell you can ask but that is a long story....

We move ahead....trying real hard with her diet and getting more food down her hatch....and soon to be hoping for a miracle.....

I think we all deserve one. ya think????? I think of little Autin tonight(not to mention names) and the cute one year B-day pics and how GREAT he looks with the effects of his ACTH wearing off his pudgy look.... thinking back to Madies one year B-day she was so pumped on steroids...miserable...we had SO many presents and friends coming to celebrate with us...she was sleeping the whole time....her eyes were so swollen she could not open them!! Madie is 0 for 2 with miserable B-days....her 2 yr b-day she was teething so bad and screaming so much I gave her tylenol she went to sleep.....she was throwing tantrums each time I put her down!!Oh....Austin...you WILL get over your spasms.....I cannot promise that will be the end of your seizure journey......but things will get there....teach madie the ways of standing will ya!!?? she just hates it!! let her know how fun it is will ya??

*sigh* Im outta here....its nearly 815 and I have not eaten dinner!!!

Hugs mamas....you are my rock.

jamie

long week ahead...

Minus the strands of my hair! lol!! she was laughing hard...:) :)

Awe man! thiiis kid..so full of giggles today! fiiinally a day when the teeth don't hurt or she is constipated or is having seizures alll day sleeping.(one so far today)...
I call these honeymoon days...ya just never know what each day holds with unpredictable seizures...

So far she wolfs her Pediasure drinks..can't say anything monumental with solids but we are going to try for dinner later...

Her sleeping continues to be exhausting...down by 830/9 and up at 6/630....Now, 8pm bedtime is great..but it makes a long day for me...looong..with short naps with tossing and turning...she is becoming easier to wake as well..at one point you could have football parties in her room and not a peep...lol..I guess that is another sign somethin' is working!! I HAVE heard of using melatonin...I want to use it for ME instead!! lol...Dr. Neuro (D) told us about it...

She always seems to have the most energy in the evenings...dunno why..hubby said maybe since the drugs have almost worn off for the day she literally feels better...then at 6pm its time for more and by 8..zzzzzzzzzz shweepin...

We are (well I am) going to begin weaning her off her clonopin tonight..I am nervous for this with fear of seizures getting increased buuut I also know I don't want her to be on a barbiturate any more (dont worry doc said OK..lol) I have just hesitated cause Ive felt like she has been OK...

She weined off her Topamax with flying colors a few months ago....I guess as long as you slooowly decrease there should be no ill effects..I see this as positive improvement..if anything she will be more awake!! I tell ya at one point she was on her Topamax, Clonopin and Zonegran...her eyes would roll in her head and her head control was terrible...dizzy like...

In other news...EEG on tuesday!! A looong one..at least 6 hours....oh the lovely accommodations of children's medical center....We will be armed with light up toys, blankees, Potion and shakes, and money for cafeteria coffee!! I will take some pics..:)

After EEG on tues we go back the following day so doctor can tell us alll about it...he may not get to read the whole test but we will have a good idea for the time being...Ill write about it....

Im horribly nervous about it...I just can only hope its no more IS which I am pretty convinced it is..buuut we need to identify the types she is having....ugh.

One day at a time...Its a busy week ahead with my stupid job putting me on allllll day Monday, EEG at 830am tues, neuro at 1 on wed, Madie's P.T at 3 on thurs, back to work on fri and sat...

I surrender!!

Well hope everyone is hanging in there and Ill be posting in a few :) Unless anything remotely exciting happens..

~J

The pretty pediatrician..

Here I go.. back to back blogging.
Well I just feel a need to vent...seeing there is no one here to chat with....
Pedi apointment went Ok..I left feeling verge of breakdown...I cried all the way home..I was a mess of eye makeup and sticky tears when I got home.
I feel like there is just WAAAAAY too much on my plate and I cant eat it all...I just keep stuffing food into my mouth and my stomach explodes...then more food keeps comming....
Madie is in the 2% for her weight now..in need of more calories and more fat...they want to run a test where they can see HOW she eats...weathor she swallows correctly and doesnt breathe her food in...and if she can chew... begins with a B...why cant I remember it??????? Then a G.I doc as well....Camerans mom is familar with THAT....eh? get that fiber goin girls!!!
In a nutshell madie needs to beef up...she needs calories and FOOD... I was given the adivce in the meantime to go buy some Pediasure...great....10 bucks a 6 pack.....ugh!! For the calories...and in the meantime wait for calls from all these specialists.....
Being told its baby steps twards all the goals we have for Madie and to not have unrealistic expectations of her...what is that supposed to mean??? Ok so madie will not go to YALE...we have established that...... Is it unrealistic to expect her to walk one day? Is it unrealistic for me to expect her to be seizure free one day?? These things keep me alive!! ANY incling that she will be in a wheelchair or NOT seizure free is UNACCEPTABLE TO ME.
Then she told me I needed therapy...."You need a support group she said" "or just someone to talk too" Looking at me like I was a mess.....(she was so pretty, she is an Indian woman wearing one of those pretty colored what do I call them....on her head..perfect eyebrows....lol)
yeah thanks...."story of my life"I wanted to say...
Then last but not least we vaccinated her with her last Hep B shot and her Polio....I promised her I would get no shots to today in the car......."oh like she knows what I mean"
It was tough..when you handed the plain truth about your kid....and that aside from seizures there is a WHOLE other ballpark of delays I have to deal with..once agian going back to the food on my plate.......whew.
I was just so overwhelmed when I left..I was a blubbering mess ..then as I am trying to pack up her stupid stroller the wheel falls off for the millionth time..I seriously almost threw it as hard as I could thru the parking lot..I had just HAD IT.Had it with seizures and THE STOOPID broken stroller!! Poor Madie girl sniffling thru her sore thigh from her shots....I gave her a smooch and closed the door to the car and we drove home...*sigh*
I can't even describe the overwhelming feelings I get..."like madies future rests on my sholders..and its up to me to do so many things??""
Take a breather mama...one step at a time...tomorrow its off to tarje to get some of this pedia sure with hopes that little madie will like it..who doesnt like shakes??
Till next time :)

Just a quick hello

Madie and her suckie...a love story...:) LOL

I wish I had something exciting to tell...I am pretty tired today...thought I could get Madie to sleep about 1 but that did not work..then bout 2 she begans to wine and I go into her room and she is sprawled out like she just had a seizure.."great" It did not help that iI worked a full day yesterday at work....

SO she eats a bottle and is NOW sleeping.... she has been a total grump today....sleepy...winey...gah!

Me? I get no sleep...sleep is for whimps. Tonight I plan on making some soup and watching my shows...if she goes to bed at this point huh? lol. allll this sleep she got!

Well anyhoo we have madie's new pediatritian apointmnet tomorrow...I am at the same time looking forward and not looking forward to what she says...how she will "report on" madie....at what age is she? I hate those labels! Like my "what to expect the first year" book...Aka...firewood...

...I know I want to hold off on any vacinations....for now...I am not against them but I am nervous about them....maybe wait till she gets older...eh?? or just get em done?? I dunno.....It seemed like her first year of life was so full of these shots...some were tolerated well some were late nights....with spitting up and tears...

MAdie just turned 2 yesterday...I know I should be so excited about this... a milestone for most kids...a graduation into toddlerhood....bye bye baby stuff! hellllo bigkid stuff!! So not where I imagined being...even last year when she was pumped on steroid shots and pretty much miserable the whole day...I would say "next year madie" next year" Neeever thinking that we would STILL be going thru this...OH I was ready to take her trick or treating!! Never imagined.

Madie as usual made out like a bandit with her cute little presents and outfits with dreaded hats from grandma....lol Now the hats are SO cute on madie...but she FLipps out when you put one on her head! lol! I think the Build-a-bear from Auntie was much more apreciated...lol

She has been quite the tantrum kid too...screaming when I put her down or when she is hungry and lays on the ground and arches her back and screams and tears come out!! gee wiz!! I am really going to have a tantrum kid on my hands...doesnt help that I am HUGELY overprotective of her...she is pretty used to gettting what she wishes....and snuggles.....(yeah have fun with that when she is 12!!!)

Oh my baby girl. she has been having good days for sure...but not seizure free days.... I usually hope for them closer to bedtime...so she will just go to sleep instead of sleeping the day away...but ya never know. I have another scary video of a seizure I may or may not post...but like I say if it helps people understand their own childs seizures...than Ill post.... still debating.

Zonegran is Zonegran...still at the same ol dose....clonopin as well....I am scared to try anyting differnet I am so sick of the side effects...is she just destined to be a zoned out sleepy kid?? Not if I can help it!! ( I like to keep the med update as well....I know exciting...) We see Neuro NEXT week...still no call from EEG folks for her 12 hour EEG...I am a bot frustrated about that hoping that we would have that done before we go in...."you know how it works"....*sigh*

ANYHOOOOO I had a blast from the past last night talking online to my best friends sister...now why her sister you ask? Well my best friend died from cancer in...I wanna say...2001?? I had been friends with her since I was 5... It was one of the hardest things accepting that I would never laugh with her again... or when I was married that she was not going to bemy bridesmaid ....or meet my baby!...Sadnesssss aside her sister is now a mom with a gorgeous baby girl and we talked bout life...(made fun of a few people....lol) it was nice. kinda my small connnection to my lost friend...felt a sense of calm...She doesnt live far but our lives are just so complex...its a tough one. I hope to somedya reunite...it would be something. I have felt that I have gotten to know her more than I ever did back in the days...and I think its my Friend's doing...from her litle sparkly cloud in Heaven....

WELL..... I will keep you all posted on apointments and any drama that unfolds...I have to go get Madie.... she is hootin! eeeek!! Errr maybe false alarm.... lol dunno!!

Hangin in there.

Thinking of lil Austin...any good happenings?? Oh and Cami just keep that fiber goin girlfriend!

Awwww our kids...gotta love em.

Boogie Boo Kid.

I succumb to my old habit of picking and pulling out my eyebrows...I was in the car running errands and I put my visor down and I notice one of my eyebrows getting thinner....ugh. I tell ya my mother did the same thing with her eyebrows..why? STRESS...when I am concentrating or I am nervous my hand goes to pickin...its so weird!! Just thought Id share that random thing...
Oh my little Madie..what a sparkle she had today..BAD tooth day...she actually bit her little thumb! she chomped away on her hands more than usual...tonight I gave her a little Tylenol and she felt muuuuch better...finally going to sleep...she was up most of the day! I had to put her in her crib so I could shower! there was no stopping her today...winey at times but otherwise happy...this pic from this morning..on her favorite IKEA blanket...lol.
I was unsuccessful in getting her in her stander for more than 10 minutes till the tears began to flow...but 10 min is 10 min...poor kid :( She did great with her food...I have these little bowls I got at Tj Maxx that you are supposed to use for measuring things to cook with but they had such cute colors I use them for baby food.....lol. She ate some Squash and some mixed grain cereal...mixed... I do not feed her rice due to her pooping pebbles every day....lol.. but she ate it! Never full jars but the cereal makes up for the rest of the jar I save for tomorrow... I have kept her on the Next Step formula..she likes it and seems fine on it... I really finally looked at the labels of both kinds...and well....aside from a few things I cant pronounce they are different in the calcium and something else....dunno... "I'm no doctor"...
We are not getting to the Feeding specialist till DEC 15th!! gee wiz! did I tell that already?? In the meantime I feel like I am on the right track with trying a little food 2 times a day...
*sigh*
Well I still worry every day when madie will get on her feet.....She was able to sit on her own only twice...and both times she was on different Roids...ACTH and Predisone...not at once of course but the times she was on each she could somehow sit....
OH gettin there....ONE day at a time....
I feel SOOOOooooo close....!! This battle...I am not certain that her current seizures are doing as much brain damage as the spasms did..but she had spasms for awhile and it takes time...I am giving her time...*whew* hardest thing ever......being patient with each day...weather its 1 seizure a day or 4..... ya never know... I fear the most that something that effects her physically is being damaged by her seizures...gosh I dunno....maybe a MRI would tell us.....
One step at a time.....
I have to cut short...hubby is yelling from downstairs that "shows" are on...a good laugh is necessary at the moment...
:) :) "keep on truckin"
Holi, Sometimes Zonegran curves the appetite....(10times better than Topamax)maybe hes not eating as much cus hes just not hungry.....what a chunky monkey! those cheeks!!WE WILL ALL GET THERE....
Ill be in touch :)
Cami you are still my hero..:)

Madies therapist gave us THIS...Its simply called a STANDER... Well the first time I put Madie in this thing she screamed! not wanting anything to do with it...It has been collecting dust in my guest room closet for a month now...till now.... Now just adjusting the feet part was a pain without making it look as if it would buckle her little ankles...after this pic her therapist helped me fix the foot things...but she is offically tall enough for it now...but little shoes are needed for her feet. I was shocked that her Birth to Three program actaully let us use this thing for FREE...it runs I think between 2 and 5 grand!! (dont quote me on it) They say that this thing will help her "learn" to use her muscles...to build her strenth and get her someday able to stand alone!
She did a whole 20 minutes in the stander without a fuss...than had a seizure ..... She bumped her head on the darn thing and now has a red mark near her eye...maybe leading to a black eye but we can only wait and see..her first seizure related injury..
The Nuero said from the 3 Videos I brought of Madie seizing that her seizures look to be Atonic seizures...loosing muscle tone when she seizes.. and PLOPing when she has them...I looked them up and sure makes sense... He said good thing is its not IS anymore...."well DUH" and with that knowlege we move forward.... I wanted to post pics of madie in her stander...we are going to begin doing this thing a few minutes each day......
I will keep you all posted on anything...I took some adorable pics of madie today..worthy of framing for Grandma!
*whew* Patience mamas.
:)

Ghetto Kid in nothing but her white Onesie.....lol

Oh my Angel. These take a LOOONG time to upload...so I wont post many...what I can get for sure..:) I have some on my other camera but for the life of me I cannot find the right cord to hook up to the computer!! gah!

This is my amateur vid of one of madies attacks...I have a better one but cant figure out how to shorten it...I will post more soon I promise. I want to share these with people maybe for a learning experience..I know when I saw videos of Infantile Spasms I then KNEW that that is what Madie was doing...

Went to Neurologist today only cause yesterday while she was sleeping I saw a whole lot of seizure while she slept on the couch...I was crying during that vid...but figured this one is a start.(not couch video) Poor kid was eating her squash so good...big girl! Doc said looks like Atonc Seizures..with the sudden loss of muscle tone... I was thinking Tonic Clonic..with the stiffening THEN the loss of tone....I dunno... prognosis? Dunno...depends really WHEN and if you can get rid of the seizures....(insert tears and cursing here)

Apointment was good. We are going to bring madie in for a 12 hour EEG.....maybe an overnight one... I am not sure what they will have for us..I wait for a call from the EEG folks...(dontcha love that?) Doctor also talked of a drug called Lemictal....I think that is how its spelled./...its sure how it sounds...LA-MIK-TAL... saying this was another drug with minimal side effects...BUT for now we keep her on her Zonegran and soon get her off the Clonopin..to further increase her alertness...Hooopefully...

She has tolerated Zonegran reeeeally well...she is a little bird behind me making her happy noises and raspberries......I have even heard GIGGLES lately...sometimes just to herself or when I bounce her and go "buzz buzz" she loves the "buzzzz buzzzz" when Daddy does it and he gets closer and closer and then kisses her cheeks...she giggles oh...the cutest! you can see the anticipation in her face she knows its going to tickle with Daddys whiskers...:)

I want to see how the EEG goes...and I want to see maybe if we give Zonegran increase another week see how she does...i am not jumping to try new meds....I love her sparkle now..I dont want to dope her up..... Id like to get her off clonopin before we begin anything else.... *sigh* I am tired of reading things about Seizures I am tired of crying...I am tired of worrying about Madie... Oh this journey....

I felt Ok when I left Hartford Children's Hospital today....I felt like things will be OK.....I felt like we are moving in the right direction.....her Neuro is so determined to get her seizure free...he never tells me that she wont be someday....SOmeday.....*whew* I can tell you THIS that her seizures are NOT Infantile Spasm anymore...is that a better thing? Well to me anything is better....but why are they still so hard to control?? There is nothing the same about Seizures they are all so differnet to me...how can you say they are "just your average seizure"?? I am anxious to get Madie in for her EEG...its been since FEB when she last had one...she was still having Infantile Spasms then and they told us they were still present...(My Holli story I told her) I am wanting to tell her that THEY DO GO AWAY...but when and if they don't progress into another type of seizure is something no one can predict...or how the kids will be developmentally is also just "up to time" you just dont know...

Madie's Neuro said today that he wants to hold off on the Lamictal and give her updose some more time...and get her in for her EEG and the Nutritionist..

OH he also told me that If I have to feed her formula to feed her the regular stuff not the NEXT step...saying that you need more solids with Next step....*sigh* Ill figure it out someday!

She ate a WHOLE JAR of food tonight!! my big girl! I guess that is all from me tonight...I have to work on getting the little bird behind me to sleep..lol (video still processing....lol)

Till next time :)

spent mama.

I have spent most of the day crying for madie...I am phsically and emotionally drained from this year long battle... Her seizures were not great today and while she slept on the couch I lost count of the small ones she was having. I manged to film them with my digital camera so I can bring them to the doctors....Im no film maker but they are good enough to get the idea.

I am going to bed tonight nervous of our Neuro apt, unable to open my eyes anymore and feeling the burn in my eyes....having that "if I dont do it no one does around here" argument with my husband over a newspaper bag on the floor that each of us refuse to pick up...

I put it in his cereal box for the morning..........

Anyone ever see that Everyone Loves Raymond about the suitcase that no one would bring upstairs and ray put smelly cheese in it.....??

Nite nite..

Oh...Madie is still awake..nevermind. See ya dark and early.

Ill keep u posted. Thanks for reading :)

ZOne-uh-gran..

Zone-uh-gran...our wonder drug? Well we have finally gotten her back in a nighttime dose schedule...I want to say if anything even if she has felt better...her alertness and her EYE CONTACT and watching me when I play with her...and the smiles...Oh...so cute!
I hold my breathe on the good days....If only they would continue and sooner than later she would begin to GET THERE!!!
I say I hold my breathe cause I never know...I dont let myself get excited about them...if I see say a few MONTHS of good days...then I start to brag...I am trying so hard to get her on a eating schedule and when I do get her going on anything its time to go back to work and it takes me a couple of days to get back in the swing.. but that is another story....
Today she was so tired after barely napping she zonked out at 630!! Its gonna be an early morning...great thing I get to work allllll day....that too is another story..gah
In 10 days my madie will be 2! A milestone for most kids..graduating from infancy...becoming a toddler...sippy cup time...eating real foods and ditching the baby food....I want feel bad for madie but I also know that deep in my heart madie will get there and I dont want people to feel sorry for me or madie......we seizure moms are alllll going thru this.....
Its the outcomes of each child that is different and you feel like you just want to be a lucky one..like your child will be chosen as the winner! and then the other kid? well sorry......tough luck buddy...but you just dont know what to expect...and we all know in our hearts that if we can "simply" just rid our kids of their seizures as early as possible we want to belive they have a fighting chance!! dangit!!
Specially when all the darn tests come back normal....
what is normal anyhoo.....???
She is still reluctant to eat her baby food and yet to walk...and sippys?? ohhhh that seems so far fetched! Her little legs feel so strong and she is so good at bearing her weight on her feet but has no ballance to keep herself up and her arms dont catch her... they just have minds of their own...and her hands are always in her mouth..
I have our list of drugs in my blog "the beginning of time" so I wont go into them...but her Zonegran has been the best so far...we are a mear 5 days into her increase....I cannot tell you how many seizures she has in a day...this is the time where I start really watching...I give em a week and a half......her seizures are so few!!!
I reeeeally dont want to go thru this Keto Diet!!
Well I guess not much to report...no animal nests in my engine lately....lol.. and I have successfully had it up to HERE with my lame job...I could tell that hubby would be pissed if I quit so I am hangin in there....giving it another chance....although he says he supports any decision I make about it I can just tell...... its not one he wishes I make...
that too is another story....
Her therapist brought us the small torture device called simply "a stander" and we are instructed to put her in it for maybe 15 minutes a day or as long as she can tolerate it....Ohhhh the hard tears she cries in this thing!! ugh...... I have not been good about putting her in it.....did I tell u that?? Oh Ill get pics of this thing...its on loan from her Birth to three....onemore year of them and then we are off to the school system for therapys....
She'll be walking then right????
Well mamas...Im really tired and this mama needs her beauty rest cause I gotta work till 530 tomorrow and get up with madie early.....yup...its a sat...

And the moaning and groaning is done!!
lol
me.

Sparkly Girl :)

Madie's Therapist said yesterday that she had a sparkle in her eyes like she was just so alert and happy go lucky yesterday... No seizure till almost 5pm... Although today she had her first of the day at 8am...hopefully that is the end of them today!!

Her mood this Am was LOUD..and happy(at 615am)...I had her in full blown laughing while I bounced her around on my knees..bearing her weight on her feet as she went uuuup and Dowwwwn..it was the cutest! I want to bottle those moments...when her 8am seizure came I was just compleatly down off my high and just layed her back in bed... she was up an hour later...feeling OK...I took her to Target and we bought her some Squash and some mixted grain cereal..squash and nanas seem to be the hits now...although bottle is stiiiil the clear winner...

At the Nuero apointment at the end of the month we will be refered to a nutritionist for Madie to help us get her eating more and getting more nutrition...they are concerned that she has not gained much weight...."she's skinny!!" God, I wish I had that problem in my hips and bum!!

O have been NO JOKE...asking them about madies nutrition for MONTHS!!!

OUR sugestions are NEVER right...... you wait a few more months and then the doc takes credit.. "Oh...maybe we need to get her off Formula"

YA THINK!??

Sooo I am anxious to see what they have to say...the usual "keep medictaion going" or maybe something new...I heard talk of the Keto diet...which I dont have much faith in...I see it more of a pain than anything...a day in the hospital depriving her of food....shoveling butter and cream down her hatch...while she screams and gags...."I want my nanas!!"......keto formula!....ugh...

I feel what have I got to loose...but I also feel it will go on the list of things we have tried...

Her seizures are few...some not as strong as others...when they are strong they are pretty scary...her eyes are all rolly and her body just ends with exhaustion...and a long nap.. sometimes I see small ones as she sleeps like a small wave of electricity is going thru her... in slow motion(kinda is huh?)...quick stiffenings and google eyes that are enough to jossle her awake and she goes right back to sleep.....

I am determined to get some on film...I have an old school camera that is only functioning when I have it plugged into the wall and its by todays standards like 3 times bigger than the usual ones..and its maybe 4 years old.....lol.

OH OH

Has anyone experienced Sleeplesness on the Zonegran? I sware I have not been able to get madie to bed till 10....11...on a good day 9.... I Am beat!! Ya think maybe she is just feeling better because its not her norm....lol...juuuust askin...maybe this drug is sloooowly making her feel better if anything...she is always so sleepy...and as much as I welcome this alertness I cant do it at 11 at night!! and get up at 6!! oh baby girl!!

Well Like I say...bottle the moments...I think I am just always so afraid I will only see her do some things once! then ZAP ZAP comes a seizure........

keep on truckin...

jamie

Anyhoo....tonight we go to my inlaws house for some diner and my hubbys Brother (Madie's Uncle Pete) is home for a long weekend from Colorado. He is smitten with her and has not seen her since I think...Christmas...geeze!

BM's and Oil changes...lol

Thats BEFORE MEDS....lol... She was only days old...still a little jaundice..but I wasnt worried at all...we called her "lil thinker" in this pic. October 06- look at the formula mustache!! LOL!
November going on Dec 06...what a porker! she ate soooo well...Breast feeding just was not flyin with this formula kid~
I want to say this is...April...07 We had a OK to start Rice Cereal...first I ever saw her grip someting and look at it...that lil pink spoon was the best!!
She was just beginning to smile...I was determined to catch it! lol... camera action was tricky..with messy food all over! the tiny crammed apt!!
Her Onsie says "I love Daddy" on it...I want to say...er....5-6 months here...we were a little concerned why she was not crawling but...allllways told she was moving at her own pace....
OH what a pork chop!
Well I thought Id share some comic relief....lol...
We are trying to get her on her nightime med schedule again...after messing it up on Sat night when she vomited her food and we gave her meds on Sunday morning..... she was pretty tired today...one bad bad seizure but the rest were smaller.... I took her to the bank(my sweet grandma sent me a 25 dollar check...lol) and to Childreans Place and got her some flair jeans and a couple of cute little fleecy tops....stress buster... It was nice to walk around the shopping center that is all outdoors...its all fancy shmancy with muzak playing and all!! they tore down a gorgeous golf course to build this thing! I cant afford much past Old Navy and Kholls but its nice to stroll thru..."SO J-Crew!!"
It was in the 60's today in CT...and us New Englanders welcome that first frost....The spiders were OUT of control this season (I will send Karen a pic of one of those bad boys....teasing her fear of spiders) they are big and brown and have big rear ends on them and make strong webs that snap when you tear em.....(insert chills)
I was at the Oil Change Place...(speaking of chills...) rymes with "iffy ube" LOL...
Well I was annoyed that the thing was going to cost almost 40 bucks...but it was eaither drive to Hartford where I bought my car with madie in tow and wait forever or just go to Bristol "iffy ube" and get er done..
I mentioned to the guy to check my air filter...there has been a HORid stench coming thru my vents...for 2 weeks now!!
He went on to say "no worry maim that is part of our signature service"
Oh...Ok....So I get out with madie and go in the tire smelling waiting room...
The guy comes in and is like "Oh boy Oh Boy! I An't never seen anything like that! They was like little FETUSES in yo air filter maim"
Fetus?? eh?? did he just say Fetus??
Apparently some animal I am guessing chipmunk or mole had made a nest ON my air filter and of course the darn things were charred to death ( I did not SEE them, he removed then before showing me the nest)
Awwwww I was ready to vomit..... The smell that possessed my car was indescribable...and to learn that it was ANIMALS......(insert more chiills here)
So the guy proceeded to rip me off charging me 40 bucks for an Air filter and telling me he was cutting me a 10 dollar off break....yeah.......
Awe I dunno...done is done...
Shoot! I have dinner in the oven! doh!
Hugs for now mamas...have a glass of wine and take a load off.....
me.

I think I can... I think I can...

I sit here this morning tired to say the least..Madison would not go to sleep till 10 after 10..and to me, nightime is MY time...my time to take a load off..watch a show...have a glass of wine..read my book...anything!.. When I do not get this time it makes my day looong. Rise and shine at 630am..no matter what!
Anyhoooo I come to read Austins blog and I am heartbroken..I want to cry with his mommy..I HAVE BEEN THERE. Last Feb we took Madie into Neuro for another EEG after the holidays her seizure had come back...after a month and a half of freedom...when we heard her spasms had returned I was blank. Upon getting into the car I break down..my body was shaking..I was paniced..I was feeling the most helpless feeling I have ever felt in my life! I looked behind me at my little one with her gooped up hair..eating her feet...smiled and cried more... Heres my poor husband trying to drive thru Hartford traffic....
I wish I knew when this will end..I wish I knew the best meds or the best diets..anything. I am just a first time mom who certainly did not sign up for this! You can read all the stories and some are good..some are bad..your head will spin!!
I remember all her tests comming back normal....Normal?? theeen whaat is wrong??? Its by far..hands down thee most frustraiting part of this whole journey.. The Spinal test was not bad! Its a scary one but they sedate them so much that they go thru it with flying colors..literally...and one little tiny bandaid on their backs...nothing gross and bloody I promise..its a great test to have come back normal for sure..:)
I remember thinking if we just get thru this Magic cure Acth we will get on with our lives and raise a little girl...
I am sorry if I sound like there is no hope...hope is the only thing that keeps me going..hope and the unconditional non-judgemental love for Madie..even from people I have never met!!!
Its not easy guys..I want to belive that my tears will be dried and someday Madie will outgrow this... I will stick by my plain of going to Disney when she is one year seizure free and walking. no doubt. It breaks my heart to a million pices!!
Ohhh we will get there...its so hard to belive that there is not cause for this!! there has to be someting in her brain that is causing this! if there is not anything in there than she would not be having seizures eh??
We are on 200mgs of Zonegran now and I am still only a few days into the increase...I like to give things about a week and a half...then if we are stiiiil seeing seizures..well you know the drill.
*sigh*
and *sigh*
Madie as stands is at a huge plateu in her development..its frustraiting...I am ready for the next step. Weee shall see... I will blog about her neuro apt at the end of the month as well to let you all know what he says.. We also have her 2 year wellness with her NEW pediatrician...a Developmental one I am excited that she was taking new patinets! Ohhh keep those fingers and toes crossed and DONT GIVE UP HOPE>>. We can all have our teary days and our "leave me be" days...but thru the stress and panic attacks we must go on.
The best we can do is love our kids..its the strongest thing I have anyhoo..dunno bout you!!
Today I am off to attempt to spend a 50 dollar Peir One imports gift card I got for my b-day...just not so much into the Mediterranean stuff or 20 dollar plates...oh and funny gourd shaped baskets!! gah!
hugs and hugs
Me.

One down.....

We have gotten the OK to go down off the Clonopin!! Woo Hooooooooo! this folks brings us down to ONE drug! One drug we can see if its working...ONE drug to see if she is having side effects from.. one drug we can keep track of... We have just increased her Zonegran to 200mgs a day..I cannot say that this up dose has worked yet..we have only had her up dosed since fri..

Yesterday night she was just refusing food..she was totally not hungry...in a decient mood but was not about to eat anything.. it was medicine time and I mixed a little "potion" with her meds in an oral syringe and squirt some in her mouth...about a second later she threw it all up!! this is the second time she has done that! She was not hungry and I should have not forced food on her but this was the only way I was getting her meds down! I think these times I may try a little juice.. SO then we kinda freaked and so this Am we gave her her full dose... switching to AM meds is not what I really wanted to do..but she cant go a day without?? There was absolutely no one I could call and ask...good ol docs are closed! and it was not a 911 emergency... I mean she WAS Ok.....

I am not one to really freak out unless she is projectile vomiting she seemed fine...after the fact...then she layed with her blankee and was passed out snoring and all.... ohhh sweet girl....

Sometimes you just never know what is doing what! I believed from the get-go that Clonopin doped her up... AND if she begins to have horrible seizure numbers than we know that THAt is what could have been helping.. but for n ow....come Monday we are going down foks!

HEY I was also wondering...do you think sometimes the meds cause muscle weakness?? maybe that is why she cannot use her muscles well?? Or even able to try?? She has been on allllot of drugs in just one year!!

Oh please hope that getting rid of Clonopin will help her out .....as with any drug change I am nervous...but at the same time what have I got to loose...madie has lost a toddler hood!! Iam going to have a 5 year old with no sense of danger when she gets movin!!

Im ready! bring it!

Ill blog some more in a few days...a busy week ahead my hubbys brother Peter is visiting on Wed for the long weekend...! he lives in Colorado... also bringing his NEW girlfriend we can all harrasss him about! "should be interesting" lol! hopefully I can get some cute pics from our family dinners..

OH OH my thoughts are with lil Austin and Cami...I dreamt last night that I was at the store and saw cameran there...she was just shoping by her lonesome with a little handbag in tow.......lol

jamie :)

Drugs and More Drugs....

How much is too much drug?? Just heard from Neuro and they want to increase her Zonegran by another 50mg...making her up to 200mg... Where is My madie in this picture? what the heck is she looking at? why does she do so many weird things with her hands? She is in that cloudy world between seizures and drugs.....drugs that try to fight the seizures and make her a dopeee kid and seizures that prevent her from developing!

*sigh*

I reluctantly agreed and then called them back..not even 5 minutes later getting a machine...asking if we can get a go-head to reduce her Clonopin...I think that may be a fair deal..I have been feeling like Clonopin has been doping her up for the longest time...its a freakin Barbiturate!! "nays" every time..I mean do you reeealy think the Clonopin is doing anything?? This very morning I was kinda freaked when I realized we only had half of a half left in her bottle and not her usual full half..figured some is better than none and I have since had it re-filled this Am...but never gave her the xtra half of a half...she finally went down for a nappy like an hour ago!! happy as a clam. But does one day really make a difference?? DO you think it may be causing muscle weakness??? Maybe that is why she cannot crawl or walk? Something in her brain wont even let her try let alone motivate her to!

Too much drugs.

For one year now we have been changing drugs, increasing drugs, weaning off of drugs...Zonegran has shown the least amount of bad side effects..and so far the best control but not seizure free...only those two random days... GO back to blog entitled "the beginning of time" to see her list of drugs....not typing them out and repeating myself....*sigh*

I hate pills. The most I will take is an Advil....during my period or when I had my wisdom teeth out....oh and Robitussin when I am deadly ill...I hate pills.

My mother had a long History of abusing prescription medication and alcohol...eventually it took her life when I was 17....

Shocking fact 1 about me.

(I will do my 3's...I looove that! )

So anyhoo I dunno what else to say....I am just going with the flow here...hoping that something will give my madie a chance...

thank you for letting me vent a bit... Im going to go read my book and relax while madie sleeps.

*shreak!* New Nicolas Sparks book!!!

lol

Me.

Oh those crazy kids.

Yesterday we had our Three year Anniversary...although far from Romantic with no babysitter and some take out Chinese food we were thurout the day remembering where we were thru that speical day at particular times...like 230 is when the ceremony beagn....and then after alll the pics were done about 630 is when the party began...it was so nice to remember that day...I did not dare bust out the wedding album and get the water works going!! OR the honeymoon pics!!

We were married in a small stone church...just gorgeous! in a historical town and all.

It had been nearly 10 years of friendship combined with about 4 years of dating for miles to finally propose...I tell ya I almost fell off my chair when he busted out that ring!!

Can I tell that story?? Pretty Pleeeeeease!

We had planned on going out a Sat night to see this Awesome Beatles Tribute band at the local bar and on Friday he decided we were going out to dinner....i am all tired from work and tell him that I thought we were going Sat!....he says we will still go see the band but he wanted to go to dinner NOW....*sigh* I mosey thru a shower and get dressed.

THEN he says that his brother is coming with us....eh?? ohhhhhhhh ok.Bye romance....lol

We go out to dinner and we are maybe mid way thru food and he gives me a card.. I am thinking I am seriously going to put in in my purse for later...lol.. I feel something inside and kinda freak...I open it and inside is a three stone cubic zirconium ring...we allllways joked how he was going to get me the "fiinest CZ ring I eva saw" I laughed and as I was reading the card (the decoy) he was on one knee with the spark-leee-ist 3 REAL diamond ring!! His Brother promptly stood up and began snapping pictures!! lol!!!

We had this memorable photographer at our wedding I just have to mention to0

(Cmon! Ive had enough seizure talk for one day!)

...I tell ya...."we just couldn't go with the husband wife team from the wedding expo now could weee"....Nope...

"Inspirations by Jerry" you guessed it, HE was Jerry...a nice older man...from Michigan (where his father ALSO named Jerry with a "G" went to college!) and you got alot of pictures in his packages and his sample albums were OK...for lil over 2000 we had a photographer.

I tell ya the guy showed up bright and early at the salon to take our pics, he was at the ceremony snapping away...not getting in any ones way... then we went back to his parents house and took pictures around the house...there is big yard with trees and large rocks etc... perrrfect.!

SO anyhoo this guy leaves at about 1030...telling us he will be in touch in a few weeks..I think he said like 2...

We promptly got our proof album, tediously made alllll our choices and then waited for an album...... To give you oh...a specific idea of how long we waited....we were married in Oct O5...we got our final wedding album in Feb 07.....

NO returned calls, no nothing...I was in tears thinking he vanished or DIED!! We go to his HOUSE...errrrr we come to find is a small TRAILER! bout an hour away from us...I am bout...oh..big enough to look pregnant and we are leaving notes on his door...instead of calling so we KNOW we are getting him the message..

Well long story short....we were filing papers to take him to small claims court for out 2 grand and our pictures... WHEN suddenly...the very DAY before he is due to respond to our court papers he calls us up and tells us he is doing great and our album is compleate...!

SO when he says he will come and "hand deliver them" we say Ok.... I tell ya folks...he comes rollin into the apt parking lot in a spankin new Explorer SUV and lookin like he colored his gray hair, and a spankin new cell phone with one of those blue chip head things that look like boy band head sets....lol

With an Album in his hands...... We thanked him and it was the most awkward moment ever. he offered us 500 in free re-prints...which we accepted and he came thru with...hubby met him in a parking lot near work.....lol!!

SO that is that. I guess he was going thru a bad divorce and did not have enough money to make our album...and was having all kinds of issues...that Ito put frankly could give two "poopies" about.!

The pics are OK...I feel like I can do better but who ever heard of a bride taking her own wedding pics...dunno.

Oh what a day it was.

Those two love birds workin at Tj Maxx 10..geeze...years ago...were just destined to marry. GOD I wish I had pics of us in our smocks....!

AND now here we are.