Tuesday, October 14, 2008

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 :)


Reagan Leigh said...

That's interesting. I've been feeding Reagan the Next Step as well. I looked at the back of the can and there is hardly a difference between the original formula and the Next Step. I wonder. We do mix it up a little more concentrated though (at the advice of a dietitian), so she gets more calories per bottle (30cal/ounce). I certainly know how you feel about the seizures (and the crying). So frustrating. At least it's no longer IS...that is a very good thing. Should be easier to treat. Hope the Zonegran works!

Holli said...

Oh, I've been praying for the day I hear "It's no longer Infantile Spasms." Obviously we don't want ANY seizures, but I think I would rather the "others".

Miss Madie eating her baby food! Go Madie! I remember when Austin would clear 2-4 jars a day! Now I'm happy to get half that!

Oh, hang in there Jamie. I'm always thinking you two!