Friday, July 30, 2010
Follow ups. :)
Went to see Nuero Today in Hartford.I was feeling like I had a million things to do and I coulda gotten them done in the time it takes to drive there and have the apt and drive back...uuuugh.
I was frustrated that we couldnt discuss the keto diet with him.. We have yet to start it! Due to the high cost of ketoCal and insurance denying our 2 requests to cover it..and well lets just say we ALL have bills and KetoCal cannot fit into them.
Madie has been having wonderful Seizure Days!! Now I have hesitated to even mention that things have been good..cause well after nearly 3 and a half years of dealing with hard to control seizures we have been disappointed MANY times.. I only saw 2 today and one the other day. Each morning at school this week she has not had one..which is GREAT! I have blocked out alot of my emotions when I speak to others about madie and casually tell them her story of struggle and my struggle to get her well and learn as much as I can about Epilepsy and seizure types and medicines. The Books I am drawn to like a magnet and read cover to cover with my pen or highlighter in hand. I can read all I want and know all I can about different seizure types but can I figure out what is causing them or what maybe is an underlying condition that is causing her seizures...hell, Im no Doctor...lol
Madie Love Love loves her yum yums....She is gobbling her homemade sweet potatoes I made for her..hee hee These pics were taken last week er so.It has taken A LONG time to get to this point.. we fought with doctors when she was too skinny and not gaining weight against getting her a G-Tube...It was tough call. But I did it!! Barium Swallow studies, meetings with nutritionists, feeding therapies... and ya know I realized that the only person who can get her to eat is ME. I am on it!!Forget those folks! half the time Insurance wouldn't cover the meetings we had..Feeding therapy was 40 bucks a week!! PSHT! NOW.. Opening her mouth for her food and yet she still eats with her hands in her mouth "suckles" her food is the only way I can explain..still unable to "chew" on chunks..but BUT I tell ya...everything mama mushes madie eats!! I call that a milestone!dangit!
Oh Sweet Angel. mamas little girl. Doing well in Preschool as far as I know and can do 25 min in her stander for PT! *sigh* we just keep on truckin.
Went to a real nice Italian Place for madies grandmas b-day last night that TOoo DIE! OMG it was sooo good! madie wined most of the time but heck...I sucessfully ignored her and ate a lovely meal. How? Dunno. lol
When we got home she passed out sleeping...mystery solved! ha.
Tomorrow we head to the cottage I am so stoked for this break in Humidity! Its been boiling for at least 3 weeks! Tonight we turn the AC off and open our windows to hear the noises of outside as we drift to sleep. :)
Posted by Jamie at 5:43 PM