Are you there God? Its me Madison..

WEll after dealing with a bad cold and breakthru seizures..and tears and not sleeping well...I think Madie is feeling a little better... I called the Neuro yesterday and got some nurse that I normally dont talk to...and I was frustraited..I know that when I talk to the other nurses they know who I am and know Madie's meds etc etc...this one I had to go over what she was on etc etc feeling I am repeating myself...I am hoping that one of the other nurses I know calls me today...

She did give me the advice to go get her bllod work dont ASAP...and that they need to know how her levels are before we can do anything else...well I was headed out weathor madie was sleepin or not....that was a scream fest but Madison was brave they even gave her sticker that she cares less about....LOL I really feel very stumped here...I mean if there are seizures here and there...like one small one this AM as well...but none yesterday....eh?? dunno.. I am reeeeallly wanting to wein off some meds here! ya not helping that kiddo!! I want up up on Depakote as well of course...I feel as if it was working !! Im not going to loose faith in the Depakote YET....

I am SO SCARED that her seizures will sloooowly get worse if something is not done! BUT what?? I dont know what I am going to do if madie is 3 and still not trying to stand and crawl and walk.....We have to wait for the blood work as well

OH and the eating...ugh.....you know that story...no news on that...going to see GI folks NEXT FRI!! eeeek!! As they force the kid who is never hungry to eat....

ONE day at a time.....one hopefull moment at once...

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PS- Its 715 now in my neck of the woods and Madison just had a huge seizure..at least out of it for a good minute along with jerks and the horrible eyes rolling in her head...I held her limp in my arms as she gazed into nowhere and talked to her and cradled her...she was so soft and floppy...We can only be patient and see how the blood work comes back...

I feel so helpless against this battle..

I want to curse the world! What is wrong with our kids???
I hate this ache in my heart...I want to curse it!! I want to be strong and be optomisic and KNOW that Madison along with allll our kids will overcome this!! How many years do we have to give thanks for no seizures...I got a 2 count on that one....

I will keep u all posted....

Thank you for your prayers and words of encouragement..what the heck would I do without it??

*Tears***Dear God are you there? Its me, Madison.

Me.

Ill keep ya posted.