Monday, August 12, 2013

August already!

Time flies!

Since I know you all want a Kaiden update:

  • The amino acids and new digestive enzymes are continuing to do their job - he's now up to 26.5lbs, an average gain of 1lb per month.  It's nice seeing him fill out a bit!  I get so tired of people saying he's too skinny when it's a muscle tone issue, not a fat issue.  He eats as much as an adult does in a day (sometimes more!) - you'd think he'd be HUGE, but he's not. He just has very low muscle tone.  Strong, though . . . dang he can put up a fight when he doesn't want to do something I want him to do . . .

  • He's now 4 1/2 and NAUGHTY!!!  OMG there are days . . . he is so mischievous . . . he does something naughty then quickly looks to see if I'm looking, and if I am . . . he laughs!  We've tried a variety of strategies to help him learn to behave better . . . let me tell you that 1 minute per year of age for time-out does NOT work for this kid.

  • Kaiden had something that mimics the mumps a few weeks ago . . . not sure what it was . . . same symptoms, but his bloodwork came back negative.  But since then . . . it's like another switch has been flipped cognitively.  I know he understands everything we say but now his reactions are very quick.  Even for things he has to wait for, like telling him he has to wait for xx until yy.  When yy happens, he's RIGHT there, expecting xx, like right now, Mom!!

  • I keep saying he displays many autistic tendencies, so he's finally getting evaluated at school for an educational diagnosis this fall.  Hopefully that will open more doors with therapy, as most look at him and only want to see Down Syndrome, and don't bother to look any further.  I demanded speech therapy (via the school therapist) for apraxia, and that will start this fall.  That whole situation still pisses me off.

  • Interestingly enough . . . 5 hr energy drinks contain some of the amino acids he needs - as I learned when I forgot his supplements for our last cabin trip!  I was able to source some l-theanine and some bromelain-free digestive enzymes, but not the rest.  5 hr energy to the rescue!  It has taurine, citicholine, and some other amino acids as well as caffeine.  We were going to start vitamin B12 injections soon to see if that would help bring out his speech . . . well, the 5 hr energy contains A LOT of B12 . . . he definitely got much more vocal on it, but it wasn't speech, it was bleating like an animal.  A really really awful sound (a really loud, forced, EEEEHHHHHHHH!  over and over and over and over and repeat).  That we endured for several days.  All day long.

  • We've done bloodwork, now awaiting results, for comprehensive amino acid levels.  Hopefully this will tell us what he needs, instead of just throwing money at expensive supplements that we can't return if they don't work for him.

Other than that, he's one smart adorable kid that love his books, educational videos, and flashcards!  It was really nice talking to his new nurse practitioner, when she asked if I thought that regular kids cartoons were just too simple for him (not too complex, but too simple!), for why he won't watch them.  I think part of it is that regular cartoons rely on make-believe and he just isn't into the whole pretending thing (another autistic trait).  His whole expression says, Mom, this is stupid and I don't want to watch it. 

I reiterate, again, that I hope this blog helps other parents of kids with Down Syndrome . . . feed them clean, utilize supplements, and don't wait to teach them anything . . . teach them just like you would any other kid - start early!  Just because they may not be able to react and show you what they've learned doesn't mean they don't know something, or cannot learn it!!!

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