We got Fletcher up a little earlier today and made sure he had a full breakfast, thinking that hunger may have played a role in his crankiness during his evaluation with Gavin yesterday and giving him more to eat would put him in better spirits for his evaluation with Leonid... not so much. I don't know if he is going through an attachment phase, or he just doesn't like being stripped down to his diaper and poked and prodded (who would?) but he threw an even bigger fit with Leonid than he did with Gavin. Complete with quivering jaw and tears.
So, we broke up the evaluation into three segments, letting him cry in order to get the necessary positions and information, and then I would calm him down and we would talk for awhile. He calmed really quickly, but as soon as I handed him back over to Leonid, the tears would start back up. In fact, by the time the second break came around, Fletcher was so tired from screaming that he fell asleep in my arms. Unfortunately, we still had a couple more positions to film (the whole evaluation is filmed so we can review it, and Leonid's commentary, at a later date) so not only did I have to give him over to do something he does not enjoy, but I had to wake him up to hand him over. Not good.
Because he was so upset, he threw himself into extension and tightened up a lot more than he normally does, but I guess it is good for Leonid to see him during his worst times, so he knows exactly what we are dealing with. The evaluation itself was similar to Gavin's and to others I have seen online. He talked about Fletcher's neck (or lack thereof) and basically how this has led to the back of his skull being closer to his back, thus shortening his muscles, thus making them tight, and finally, how this leads to Fletcher's favored position of tilting his head back, which is the most comfortable given the tight muscles back there. Kind of the same basic explanation for all of Fletcher's atypical favored positions.
I guess the bottom line is that, since Fletcher's internal smooth muscles (which are oversimplified terms, but I am no doctor or scientist, so it is the best I can do) are not built up, his skeleton is more or less collapsing in on itself and the bones don't have enough room to move independently, so he moves as one block. It was the most evident when he was laying on his side and Leonid rolled him at the shoulder and his whole body (including pelvis and legs) moved as well. This collapse has led to most parts of his body being in the wrong place (and "wrong place, wrong movement" so the resulting functions of these body parts are affected). His jaw is sightly recessed, adam's apple very high in his throat, clavicle wrapping around his neck, shoulder blades too high, ribs flared out at the abdomen, no butt (thin and narrow pelvis), no rotation at the waist, you get the idea.
Leonid really likes to explain in analogies to get the basic point across before getting into the details (which can be overwhelming to parents, including myself). He used the analogy of the car and driver and explained that therapies that focused on motor cognition (the driver so to speak), while worthwhile, will not get you very far if the car (ie the body's structure) is broken down to the point it won't go (or won't go very efficiently). So ABR focuses on the car, and only once that is in good enough shape, then the driver's skill is relevant. It is a very basic analogy, and oversimplifies things, as so many analogies do, but I think it a decent one, nevertheless.
Another interesting thing we discussed in the eval was the ATNR. He explained how its persistence can be a sign of structural issues rather than neurological issues. I can't remember the details right now, but it completely made sense at the time.
I didn't push Leonid to "rate" Fletcher or anything like that. He saw a few positive things (like his skin wasn't as wiggly as he expected it to be, indicating something positive about the subcutaneous tissue, but I can't really remember what (I'll have to go back to the video and review that part)). But the biggest challenge will be the arching/tightness. He basically warned us that there is a good chance that before Fletcher's muscle tone normalizes he may go from tight to even more floppy (temporarily), but we just have to realize that is actually improvement, even though to us it will seem like more of a nuisance.
Next was our third training session. Fletcher fell asleep after the evaluation and continued his nap for the first hour or so of training, so Trevor decided to capitalize on the opportunity and got in about 45 minutes of the thorax exercise we had been practicing the prior two days.
I am thrilled that Fletcher was able to sleep while Trevor was administering the technique as there is a lot less interference from the baby this way, and if we actually succeed in getting in our goal of three hours per day of therapy, I'd imagine a good portion of it will be done while Fletcher is asleep, if possible.
We also learned our second exercise today, which involved the anterior neck. I am a little nervous about this exercise, because obviously, I don't want to choke Fletcher. Although I know he can't talk and tell me if I am using too much pressure, Fletcher has never had a problem letting anyone know if they are doing something he doesn't like, so I am sure we'll be fine.
Trevor and I were supposed to practice this technique on each other at our hotel tonight, but I just couldn't resist the siren song of IKEA, so we will have to fit a little practice in tomorrow (don't tell Fehim-- which Jennifer so kindly told me was the correct spelling and pronunciation of our trainer's name).
The Boys (Owen, Nathan, Fletcher and Trevor) After Lunch
