Drew received his stem cells (we believe) on May 24. This is the first of two follow-up assessments to compare his ability at the last structured test to his ability this time. Last time, it lasted roughly 20 minutes. This time we were there for an hour and a half! Improvements were noted and he improved in several areas. Drew truly ROXX. :)
We flew out of Detroit on Sunday. Drew has flown before, but I am always anxious since he doesn't think the rules apply to him and he crabs when he wants, as loud as he wants, for as long as he wants. Bribing him is useless; he doesn't care about the latest video game or toy-store excursion. Mainly, after 12 years of making sure we ALWAYS have an escape plan (my SN Warrior moms know what I mean :) ) the thought of being trapped on a plane with dozens of other crabby travelers while my son might melt down is enough to make me wish I had a script for Xanax.
He surprised me once again! He is super smart. The only time he crabbed was when he had to wait (patience is a virtue, but one that is lost on us) in line and when I had to turn his iPad off during take-off and landing. He doesn't grasp the concept of 'because I said so.' Once I enlisted the help of the nice gentleman next to us to reinforce that, even though Drew wants electronic devices to be okay during take-off and, and there is actually a scientific reason for electrical interference with the plane controls and what-not and rules are rules. He is so stubborn, and I love that about him. ;)
He was a champ on the flights. Take-off and landing are fun, the rest he viewed as a really boring amusement park ride. He is fearless and the faster, the better. Thankfully, he understands what is going on and it was a plane, not the Himalaya we were on! Thank God for Steve Jobs and everyone at Apple for inventing the iPad for entertaining our kids!
The assessment was my next stressor. Drew has never tested well. He is very intelligent, and very (ahem), lazy. If we find the right motivator, he rocks! If not, he pretends like he has NO idea what is expected of him and tunes out and entertains himself by laughing at our histrionics trying to entice him to do our bidding. I wish I could blame the CP, but he comes by it honestly with my family :)
He improved in many areas: grasping at midline, rolling over, sitting unassisted, lifting his head to at least 45 degrees. The preceeding tasks were accomplished by bribing him with clips of shows he likes. Whatever works. I resigned myself long ago to the fact I would have to find success in the little things in life, and winning the war is much more important than winning any battle.
We go back in 3 months for another assessment and are so hopeful that the progress multiplies and continues for Drew. He is among a very elite group of incredibly brave, awe-inspiring, fierce, fearless, amazing kids that struggle every day just to exist and be comfortable. He is my hero. We learn from him every single day. Blogger friends, when you are out in the world and see anyone with added challenges, please smile and be patient. Everyone is fighting some kind of battle and we are all in this together.
Here is a pic of my Boogie to brighten your day:
It's from last fall. He so thug.
Peace, FB friends!
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