Growth

I just woke up from a dream in which I had been arrested for an unknown offense and incarcerated at a women's correctional facility in a small cage at the top of a tall tower that swayed in the wind. The movement of my cell was so pronounced that motion sickness was a permanent ailment. I began to complain to a nearby guard that my stomach was really bothering me from being in the top cell of the tower and that I would like to be placed lower like the other women were. To my own horror, I then heard myself cave in, just as I always seem to do in reality, explaining that I was tough enough to handle it, even though I was screaming inside my own head that I felt like I would die there if something wasn't done.

I am now seriously considering canceling our appointment with the rehabilitation specialist. I asked Erik's private physical therapist, who was kneeling on the floor stretching my son like a happy little pretzel at that moment, what she thought of seeing this person, and she let out an obviously irritated snort from her nostrils in response, making me jump a little. She told me that Erik was "doing fine" and that seeing a developmental pediatrician in Portland instead might be a better idea. It was Erik's doctor who referred us to the rehab specialist, and I am now more confused than ever as to what to do. I no longer feel good about this new physician, and Erik's PT informed me that she just automatically refers children to our local hospital. This is not good news, as they are unable to help us at all unless there is some sort of heart-related problem that needs to be addressed. All I want is some reassurance that I am doing the right things for Erik medically, and I feel like I am being short changed.

The last time we set foot in the hospital in Portland was the day we were given our diagnosis. The geneticist seemed completely uninterested in seeing us ever again, and I can't seem to find exactly what we need on their website. I suppose this means I need to call the genetics department for guidance. I'm frustrated because I feel like I got steered in the completely wrong direction by Erik's own doctor. The fact that Erik's PT seems to detest the new physician here also doesn't make my decision making any easier. Erik's PT did say, though, that many parents with children with genetic deletion syndromes travel to Portland once a year to be seen. Maybe that's what we need to do.

In the meantime, Erik grows at the speed of a newly-rooted kudzu vine. My father pointed out how amazing it was that Erik's toes have shot past the end of the soles of the orthotics he wears on his lower legs, seemingly overnight. Although he has worn the braces for over a year now, his toe walking is more severe than ever, and if he doesn't wear braces, he is so jacked up that he practically falls on his adorable little face. His body has grown, too, and yesterday I witnessed him crashing into furniture, walls, and toys, tripping over his own appendages as if he had consumed four Long Island ice teas. He has always been cautious about moving about the house and has now sustained more injuries during this week than he has in three years. Erik's fine and gross motor skills have always been documented to be very poor, but this is completely a completely new low for him, making me wonder if he suddenly has more of his own body than he is used to carrying around. I just have this feeling in my gut that won't go away. He is changing in every way, seemingly by the second, and I want someone to tell me exactly what's going on medically as he grows at light speed and his body seems so tight. I don't want to hear "He's fine" and feel like an idiot for asking in the process.

I just want help for once when I ask for it. That's all. Is that so wrong?

News from the PT

I noticed that Erik is walking on his toes to the extreme now when he is free of his orthotics. Sometimes to the point where his bare toes curl under like a ballet dancer. His orthotics seem to have effected little to no benefit in the way of training him to walk correctly, although they do continue to keep his feet nicely flat when they are worn.

Today Erik's private physical therapist informed me there has been a definite change. Erik's body is stiff all over, likely because his long bones are growing faster than his soft tissues. This is not ominous news by any means, but I find it very scary at the same time, as I have seen older people with WS, including the humps, the slumps, and the strange muscular contractions. The little physical manifestations that make them appear like the elderly way before their time. Erik blew off the Williams growth charts months ago in the height category. Years ago. He has not gained weight in months but just seems to lengthen. Erik is plain tall, just like me, and yet is unlike his peers with the similar genetic deficiency. The deficiency that produced human beings that were perhaps once called "elves" or "pixies." All I can see ahead is more of the unknown in the form of a rapidly growing boy. How many WS parents have been told their child is tall, even by those who are unaware of this diagnosis? I can only do what is recommended and hope for the best, hoping the genes he has don't clash with the genes he lacks.

More stretching.

More slant board for the heels.

More protein.

More praying things will catch up in him.

I am fully aware that this condition makes any sort of typical change in his rigid little body a giant dip in this emotional roller coaster of mine. I'm trying not to worry. Easier said than done.

Grow, muscles, tendons, and ligaments. For God's sake, grow.