One of the features of Fragile X is low muscle tone. This isn't the "muscle tone" of the fitness marketing industry that actually means "low body fat percentage achieved by wasting time lifting 5 lb. dumbbells." The term "muscle tone" is derived from the word tonus, which is a state of contraction for the muscle.
FXS's neurological component means that Henry's muscular strength lags behind children the same age as him who aren't affected. The nervous system has as much to do with strength as the physical size of the muscle.
Henry lacks upper body strength, which is why you see him crawling on the floor using his arms instead of on hands and knees. But through the last few weeks of physical therapy, we've been slowly building his upper body strength, and the result is the above video.
I first noticed him do this last week when after a long crying bout in bed, I went to check in on him and found him actually sitting up in his crib. This was significant because the typical milestones have this tabbed at around 6-9 months of age. Earlier this week, when I saw him drag himself over to where I was feeding Evie then saw him sitting, I nearly cried.
The PT has clearly been helping. He's getting an intense workout that we normally wouldn't have known about. And as further aggravation with our pediatrician's office, it's a workout that he wouldn't have gotten through them, either -- they seem to be more content to cycle through well-baby visits and the occasional colds.
They're not equipped to handle special cases that fall outside the norm.
In fact, when we stopped by there this morning after Henry's PT session to ask them for a prescription for orthotics for his feet, they seemed ill-equipped to process the fact that we went to the county's early intervention program of our own volition rather than getting the prescription (because again, we wouldn't have gotten one because the doctors there don't seem to be on the ball about special needs).
So anyway, Henry has about a year's worth of physical development to catch up on, and then to keep up with the expected development for kids typical of his age.
But with moments like the video above and also this morning when he pulled himself onto his knees then onto his feet are the significant rewards. I'm simultaneously overjoyed to witness these milestones as well as aggravated that we have to make such an effort, that we couldn't have had just a typical run of things with the kids.
When Bruce took my oldest daughter, who was 4 at the time, to the shoe store, the salesman was the person who identified her foot/walking issues and he suggested a podiatrist. So for the next couple of years she wore orthodic devices in her shoes. Pediatrician did not notice the issue, but a shoe salesman did. Maybe a podiatrist could be helpful to Henry if your pediatrician is not over thrilled with writing the prescription. Kudos to Henry!
ReplyDelete