Tuesday, November 4, 2008


Well I know I should update huh?

We have had Madie on her Depakote for a few days now...not even a week since...friday night. to be exact.. and you are still not going to be able to tell if its going to work yet...so be patient mamas....

She is well....drugged at times you can tell things are kicking in...but not like Topamax...whew...that drug....you could feel her little body getting warm sometimes...she sweat alot on that stuff too...I would think her diaper leaked....nope, just sweat. yucky stuff!
I am SOOO anxious to get her off her Clonopin and her Zonegran...but the doc wants to see if we can get ANY result from the Depakote first...AND IF we do she cannot be on all the drugs at once...making her risk for Liver problems or failure and Kidney stones...OH you name it...its alll yummy.. We are on a small 1mL now...which will be increased to 2mL in a week and up and up...if we have too. Madie is just so light... we have to work on getting her to bulk up! This kid....the battle of the wits continues with her soids...but she is loving her Pediasure shakes in Vanilla....
It was not a hard choice to put her on Depakote...I had heard of the drug from the beginning but we all knew she was too young to be on it "yet".."I saw it commming" It was that or the Canada drug I was leaning twards...but he gave us like I said the two choices...Lamiktal and Depakote.
I remeber the choice to put her on ACTH in a momnet of desperation...when they tell me that her seizures are bad and agressive treatmnet is needed....whew...what was I to do???
Gosh If this doesnt help than I dont know what will...
Its for sure putting a strain on our lives...just being so frustraited with Madie not gaining seizure freedom and ALL that comes with this... We had the argument of "you dont apreciate anything I do" argument.....ending with tears and hubby comming home with a giant bunch of roses the next day...in the Fall!!$$ We just needed to take a second and remember US...remeber that we are in this together and that we both love Madison SOO much and that sometimes the things that matter most are the things that are just tearin you up!! I made some dinner last night and we actually had some time to just relax and laugh for once.
This time change I tell ya...Madisons 6am wake up has become 5am wakeup and her bedtime instead of 8-830 has been 7 ....I was exhausted!! Last week was just so tiring there was not a day when I was not going to Hartford Hospital with Madison or going to the Dentist that I am too l azy to change an hour away....or working.... Today was much welcome day of nothingness...
I went out this afternoon and cast my vote...I am excited to see who wins....Ill be hooked! There were all these volunteers at the town hall who were older than dirt! oh man!
Packed place but the line went quick.
I guess that is all....no news is good news eh?
My Husband says...in an Chinease voice..."Ahhhh soww U vote fo Erecton Day?"
I told him "maybe"


Karen said...

Oh fingers crossed that the Depakote works! It was Camerans miracle drug but I know they are all so different. But I am a wishing and a hoping!


Holli said...

Ah, so you must seen my impatience??? I was just worried about the little squirt...hoping she was tolerating and so forth..*duh Holli* my biggest weakness is impatience with these meds...and it's been a while since we tried a new one. When we started Keppra...ugh! That was the beginning of the worst since this all started (vomiting over it, higher spasms, etc). Spasms have been outta control ever since. Guess I was remembering that and hoping you guys were hanging in and not having issues with it or, hey, maybe even seeing some fast results!

Good luck!