Another fascinating day in ABR land. Today we had the evaluation with Gavin who showed us all about what’s wrong with Nathan’s little body. On the one hand it was awful to hear about everything else that’s wrong with Nathan. We thought it was just his brain, now we’re finding out his structure is all messed up too BECAUSE of the brain. The good thing is they told us everything is “fixable” and if we do the ABR exercises properly we can improve Nathan’s structure significantly. With better structure he’ll have a better chance of movement and mobility. Here are some of the things we were told:
– No definition of the jaw
– No, or very very short, neck
– His shoulder blades go all the way up to his neck
– His chest is collapsed and has almost no volume
– The shoulder blade moves instead of the shoulder joint
– The hips are very tight and narrow and have no volume
– When you press on the chest the abdomen inflates
– Joints are very loose throughout the body
– Knees creak and crack
– Adams apple is very very high, almost all the way up to his jaw
– Neck muscles are incredibly tight
– Distance between C7 and neck, and neck and top of the head, is 2 to 1, instead of 1 to 1
– His body isn’t separated – if you lift up his left leg, the right comes up with it, all the way up to his back
– If you put his neck down to his chest, the entire neck moves as one so his point of contact is near the chest, not the clavicle
These are just off the top of my mind. Gavin filmed the evaluation so I have the whole thing on tape. Later I will try to make the video, or snippets of it, available so others can get a better understanding of what I’m talking about.
I will plagiarize from Erin, who plagiarized from Katy:
He’s got all the signs: His neck is too short, his rib cage has a diamond shape, his pelvis is very thin, and his legs are adductors, hips and hamstrings are tight and bend inwards.. His arms move from the scapula rather than the ball of the shoulder, and his legs are very weak at the pelvis. So, the bad news is that its a lot to work on and Leonid will only get into it further tomorrow. The good news is that since he’s pretty classic, they’ve got a lot of ways to help him.
Now for the most important part (the social one):
We had a fantastic time having dinner with the Sprangers. Daniel is such a sweet-natured child and is super happy all the time. We had a great time just chatting and hanging out and exchanging ideas and information.
Below are some photos and videos of our day.
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