Thursday, January 6, 2011

Sparkles. Glimmers of Hope....?

Such a Sparkle Madie! :D Great Days at home :)
We FINALLY have her eating 2 full Keto Bottles a day..not fully into it but an awesome start considering it took us months and months to get there! *sigh..
Now I am still sceptical of this Diet...I mean ALL this time....A DIET?? Why couldn't we have tried this when she was just a small baby going thru about 20-40 spasms a day! Well Spasms are Spasms...we have kinda ruled out those these days..though hints of "hyps" in her EEGs (which hopefully in a couple months we will go Hartford and have a big long overnight er) There was no drug that helped Spasms..they were present and they did their damage. It was the most heartbreaking time ever..right on top of having to give her daily injections of ACTH.

We are slowly still getting her off her Pediasure...some days can be tricky and some days she flies thru it. But lately..say past few days...
So different. Like a small sparkle in her eyes..Not turning cartwheels of but just happy. Alert. "With us". My dream that this diet works and we can lower her Depakote.Get her off I dunno..that is scary but at least give the kid a less drugged frame of mind for once in her life. No one can convince me that the meds have not taken a toll in her growth and development. Folks I think we have tried EIGHT.If you dont include the Vitamin B6(LAME).
The lack of Carbs and boost in mood and lessening of seizures (twitches, Jerks, Drops, Med Seizures) has gotten me almost nervous..not in a bad that nervous excitement..just maybe just maybe cmom madie girl mama that this is working..Holding my breath this week for our "weekly grand maul" and hoping and hoping that I can get her into this diet fast enough without rushing it. Its like how some kids when they barely eat all day they dont have many seizures...strange yes, but when I think about this diet and how it has low carbs and she is still eating (as opposed to NOT) Are ya following me here? That maybe just maybe this diet will work.

No one will ever know what caused my madies seizures. We can only try to control the seizures the best we can. I think she will always have seizures...its always going to haunt us that she could go into a bad seizure at any time..I call them the little demons in her head.Trying and Trying to slow her down and succeeding. Sometimes I want to throw my arms and up and declare defeat! If I give into that I will certainly be in therapy. (although therapy sounds kinda good).
I have always been in a world of "maybe". Maybe this or that will help or work maybe we can try this doctor maybe this specialist, maybe this therapist...
I say well if she is 8 years old and finally walking so be it.
Its hard to explain Madie these past few days. I have not seen this Madie in a loooong time. The rolly polly kid, the LOUD kid (happy of course), The "no sir Im playing and not going to bed at 930" madie, Giving so many hugs and wrapping her arms around my neck or sitting with me in the chair with her arm behind her head wrapped around my Just a Sweetpea. Please Keep the good kharma and prayers and "Go Mamas" commin thru. I need those big time.
Wrap your arms around yourself and squeeze...cmom folks..(((((group Hug)))))

Please Keep Prayers for Lil Austin who will embark on a journey that may grant him seizure freedom next week! And for Lil Reagan to keep her smiles and let her mama get some sleep! And just give Miss Zoey a smooch. Just because. LOL


Holli said...

I'm loving this report!! Go Madie!! I know you just can't help but drink up all those happy Madie moments!!

You never know about that diet. It certainly exceeded my expectations. Keep it up!! You're doing great! :)

By the way, best way to sum up what our doctors have said about Austin's surgery...seizure freedom is possible but not probable. Gotta keep the faith though, right?


Anonymous said...

I hope you get everything you want from the diet. We started in May. We are down to one simple partial a month at most and my daughter is beginning to talk and follow simple directions. She has been med free for a few weeks now. She is really present these days. Its hard to explain but it is amazing to watch. I hope you get the moments of awesomeness too.