Saturday, February 13, 2010
lifes little updates :) again...:)
Ok Lets face it..there is always another kid who is worse off than our kid..and in our own way it makes us feel better about our own child...gives us hope..keeps us groudned..thinking to ourselves "it could be worse"..
Now my madie has always been the picture of good health..aside from colds and one ear infection the kid is pretty strong health wise.. I dream of a day of no medications and no seizires but lets face it..the kid HAS seizures that are still persistant and has been on her Valproric Acid for over a year with no Tonic Clonic Seizures to be seen! But it always seemed like we would get rid of one type and another would come. We have been seeing these "drop seizures for MONTHS! Most of the time I disreguard them and act as if it never happened. "oof there she goes again" "up up up Madie, your Ok" and she kinda wines a little after but otherwise seems fine. But she is not. I wonder how she would be if she would stop her drop seizures..would we see a leap in development or would she just be the same..? I am at a cross road with her meds...Now we currently have her on Valproric Acid that controlled her Tonice Clonic Seizures and another drug called Banzel..
Dr Chugani in Detroit Recomended Clozabam..a drug that is in the family of Clon-o-PIN.. A drug that was not great on madie making her very drugged and at times in her pictures she would have crooked eyes! It was so bazzar but looking back on it I so notice the drugged eyes..:(
Getting off Banzel to me would be great! BUT BUT there is always that dang BUT in there...would she begin to drop seize like crazy or would she stay the same "number wise"? Would she feel better would she feel worse:? would she be more alert?
WELL to me LESS is MORE...Madison has been a Guinnie Pig to these drugs practically all her little life! She is an absolute joy when she is alert and happy and not sleepy...
I hesitate with Clobazam only cause its in the Clonopin family and I dont want to drug her up...Dr Chugani says it has minimal side effects...that I have to see to believe...
I just dont know what to do....Only Madie can prove to us if she needs these drugs or not..and all we can do is reluctantly give them to her...her poor little body.
She is for the most part a happy kid..making her funny noises and trying so hard to get up up up...loves to play "standing" when we stand her up on her feet she looks so proud of herself...but yet to be able to hold herself up being so cognitivly delayed...
I have only had ONE doctor tell me she would not walk...and if you have been reading it was the Genetic Guy who made me break down in tears and asked me if I was on some medication cause I got so nervous in his office I was twitching....LOL LOoooong story.
ANYHOOO>>>> everyone else so far has good faith that my madie will get on her feet someday....I take it one day at a time..and love her with all my might and TRY to have patience even on the shittiest of shitty days..(pardon my french)...
I hate Seizures I hate them so much..I call them the little demons in her head..making my big girl proud sitter bump her head on a daily basis and topple over into her noisy box she so much loves..
Well yesterday was wear Red to School day and of course my madie looks so sweet in red..head to toe in red with her polka dot pants and panda shirt she was ready.
Lots of valentines she got too! some pretty fancy! Now I went to Target and got the 2.99 ones that came with a 3-D sticker on each...ok ok good right?
OH MAN...some competition out there I tell ya! these mamas had cookies and pencils and candy and more stickers and goodie bags...
Heck Ill take the cookies but the kids are THREE folks...LOL I just had a huge kick out of the party planning that went into some of the moms heads....
All in all a good day..madie loves her OT where they have a big swing she giggles and smiles in and they love when I sent Madie's Koosh in with her as well for good tummy time work outs :)
We have such patient wonderful people working with our Madie and she will get there.
Still issues with feeding as she is still not knowing what to do with that tongue of hers..I TRY twice a day and its still frustrating as I waste lots of expensive baby foods..Bottles are not satisfying her as she needs more bottles each feeding...sometimes a solid 16 oz in one feeding!! Now Shakes are expensive!! and wonderful insurance will not cover the cost of them..BUT that is another story in itself...
OT and Speech use a thing called a Z-vibe for madie its like a vibrating spoon of sorts...dunno..I have heard of it but never seen one in person...we have the ol NUK brush thing I think I have sent that in to school for them to use as welll..
Ohhhh we keep on truckin...
Valentines Day approaches and although its no trip to Mexico...a night out for dinner with that Husband Guy will work just as well. :)
Hope everyone is well.
I cant wait till this winter freeze goes away! I look forward to summer days at the cottage...I am missing it. :(!!
Posted by Jamie at 10:07 AM