Saturday, December 29, 2012

Our year is ending on a high note!

We're still figuring out what Kaiden needs as far as amino acids goes.  As of the last post, we had suspended both the taurine and the GABA, and had him on theanine and were trying out digestive enzymes.  Well, the digestive enzymes, even in a teeny tiny dose, had the same results as the first time we tried bromelaine = pretty darn nasty diarrhea.  That's been suspended for now.  The taurine had really helped with gut inflammation and made the skin on his arms and legs much smoother, less bumpy, so I wanted to reintroduce it at some point to see if we had the same results.  A few weeks ago I got lazy with the rest of his supplement mix (the TMG, citicholine, grapeseed extract, and CoQ10) and Kaiden didn't get it for a few days.  Suprisingly, he started sleeping better!  His blood test last year showed he definitely needed to remain on both the choline and CoQ10 supplments, so those two I slowly reintroduced.  He continued to sleep better, so while leaving out the TMG (which I was beginning to suspect as the insomnia culprit) with the doctor's approval I reintroduced the taurine.  And not only did his skin almost immediately improve, he started - for the first time since the seizures stopped 2 1/2 years ago - sleeping thru the night!  He still needs a fairly strict bedtime in order for this to happen, although his window of opportunity has now expanded to between 8 - 8:30pm.  And even better, with the combination of the theanine and taurine, once again he is slowly putting on muscle tone.  It's most noticeable on his skinny little chicken-wing upper arms, they are now almost the same circumference as his forearms. He had the Pop-eye look going on there for a long time!  Best of all, he is now walking 95% of the time, both at preschool and at home!  His gait is still awkward, but he's doing it!

Kaiden is a funny kid.  He may be non-verbal and refuse to sign, but he finds ways to show me what he wants, what he's interested in.  In the last month he began playing with the spelling functions of several of his toys, so we reintroduced his flashcards and he is totally loving it!  He has his favorite cards, and one of them, "jet", he smiles at and has said either "jeh" or "et" on at least three separate occasions without prompting.  He hands me the items he wants help with or wants to interact with me/with him.  He knows exactly what I say to him and can certainly follow directions, but still has a difficult time with motor planning skills, getting his body to follow what his head tells him to do.   He still does not self feed, finger feed, point, or do other simple things with his hands like wave "hi", but he can "high five", and he can pick up food with one hand and place it in the spoon in his other hand, and feed himself that way.  He can pick up single cards out of a pile and place them into another pile.  He can find/use the on/off buttons on any toy right away, no matter what they look like (and especially if they say "on/off").  I keep saying, I'm pretty sure he can read.  Next up, simple math.

Now for some really exciting news on my end . . . the cookbook I've been working on since we started this journey is going to be printed early next year!  A friend (who I got to know because both our sons had the same type of seizure) got me in touch with a printer who wants to help me realize this dream by printing my first 100 copies for free!  I am beyond blessed here!!