Jan 2015

Posts are getting hard to title.  They're all updates.  Maybe it just makes sense to put the date.

News:  Kaiden can now use his speech device to say a few FULL sentences (regarding food!) by himself.  Mostly he needs to hold my hand in order to touch the buttons he needs - hey, whatever works. :)  And the speech device is now 100% paid for, so that's pretty awesome too!

After an IEP this week, where concern was expressed about Kaiden not being able to isolate letters and the words "low IQ" and "I know you think he can read, but . . ." came up . . . let's just say I wasn't a happy Mama. Remember with motor apraxia, if the thought originates in his head, he can point to what he wants.  In order for Kaiden to be able to point to what YOU want him to answer, he needs support under his wrist.  So yesterday and today, I set him up with flashcards and asked him to point to things.  He could do it, all of it, as long as he held my finger in a certain way. I don't mean he pointed with my finger, I mean he held my finger and extended his own finger to point - he just needed that little bit of physical support.  I took seven videos.  Kaiden knows his letters, numbers, shapes, colors, objects . . . no problem.  We even did a few apps, and no problem.  As long as he has that little bit of physical support!  I really don't give a crap if it's an autism thing or a motor apraxia thing . . . he needs that support, and that's just how it is for right now.

Kaiden's total height gain since we started the whole kelp/thyroid thing last Jan= 5 1/8"!  And he's up to just over 32lbs.  And all it turned out to be was managing his sleep cycle in combination with a new supplement (Cellular Energy) for mito function + a low dose of GABA. 

So on to my new thought . . . here we are and it's winter.  By now, Kaiden's lymphedema should be in full swing.  But it's not.  It flared up early - in October.  Treated it with cold laser therapy and it went down in a few weeks.  With the fluctuations in temps, some really frigid subzero temps, his fingers should be swollen and red right now.  But they're not.  So . . . I wonder why?  We recently did another CBC and it showed Kaiden needed methylfolate.  We added it, and noticed it his verbal speech increased a little bit (hey, any bit is good!) but it also brought back screeching.  Sigh.  But . . . . his lymphedema has not returned.  Are they related?  I don't know.  All I could find was this study that asks if methylfolate in combination with another medication causes lymphedema.  Well, being as Kaiden reacts opposite to so many things . . . is there a remote possibility that he needs methylfolate to keep his lymphedema at bay, or is this just a coincidence??  Who knows.  Something to keep on the back burner and watch this winter and in the coming years.

And the best news for last: on Dec 17th (if you remember, it was December 17th, 2009, that Kaiden said his first and last word, Mama, before the seizures robbed him of his speech), well this December 17th 2014 Kaiden began imaginative play!  He's been playing with trucks, trains, dolls, and even doing some imitation activity!  I can't wait to see what this year will bring!