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.
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.
Labels: growth, physical therapy, Williams syndrome, worry
posted by Nancy at 9:41 PM
13 Comments:
We were told by Dr. Pober that Michaela is tall for her age, regardless of WS. She's one of the tallest in her 3rd grade class.
I always know when she is having a growth spurt, everything stiffens up and she toe walks. She will also wake in the middle of the night with leg cramps.
Our PT gave us stretching exercises to do every morning and night. She can't stand them...lots of yelling!
I am sorry that you have recieved this news. I have worried about this very thing with Abi. Even though she is little, she stills seems to out grown her muscles. My middle son has the same issue. His hamstrings and heel cords are super tight because he has grown so fast, everything is not catching up. According to him, it plan old hurts! I can get him to do the stretches and he is old enough to understand, I can't imagine getting someone Erik's age to do the stretches.I truly hope that his growing slows down so that everything else can try to catch up. My thoughts are with you.
Noel
I'm sorry to hear about Erik's ill timed growth spurts. I hope the rest of him catches op with him. I'm sorry to hear about the pain he has to go threw with his stretchs. I don't go to church so I'll have to light a metal candle for Erik( I promise it will never go out) I only have Glade candles at home and I don't think they work the same way :) (I have to joke it's the only way I know how to get through)
Just one more thing to worry about, huh? It never seems to end. Hopefully he will slow down a little. I guess Noah is lucky to have a shorty for a mom.:)
I was torn between lurking and commenting...but anyway, here I am.
I may not have any idea what you are going through right now, but I understand it's one rough road you are at...my prayers are with you and Erik will be always be included in my prayers from now on.
I don't know what you are going through...I am told Keith will be short. But, I will keep you and Erik in mt thoughts and prayers
I was told that Caleb is short even for WS! His legs are very tight though and trying to do the stretches is a nightmare! He is such a baby when it comes to a little pain! He does toe walk too, especially through a growth spurt, along with eating everything in sight! When is his next ortho appt? You may want to make it sooner just to help yourself feel better.
People regularly comment as to how tall they believe Avery is, when in actuality she is at about the 50th percentile...average. But she is just so dang thin with a youthful baby like face and actions, that I believe others think she looks tall for her age. As far as tightening goes, Avery is a "pretty loose kiddo" in the words of her PT. But she seems to be going through a rather hefty growth spurt right now, and that may explain some of her fussiness lately.
XOXO
Amy
B1 and I are soooooooo sad to hear about this! Ugh!!!
You know though... Erik is in perfect hands... he has the best parents and they will do the very best for him!!!!
Always in my thoughts and prayers!!
Dee-ta
Give that sweet boy a hug for me!
It is snowing here!!! Thanks for sharing.
Wow, Nancy! That description you gave makes my joints and muscles ache. Poor guy. It is so incredible the number of things that are effected by these missing genes. Not fair!
Nancy, I hate to hear about this. I'm only about 5'1 and I'm thinking Payton is taking after me (along with the ws). She is short and growth has been slow....it sounds like I should count my blessings. I hope his growth slows down. I hate it, it's another worry to add to your list.
I'll be thinking of you.
What can I say? I'm a woman of strong faith, but my seasons of tough roads have come and gone.
There have been so many moments I've shared with you about your courage. It's true, and I'm not sure I could handle this as well as you have. My prayers are with you and Erik. Hoping for miracles! {{{{{{{hug}}}}}}}
Thinking of you Nancy. Love you and Erik so much! I sooooo wish we lived closer! I'd love to see Erik and Connor play together. Sigh. Here's to hoping!
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