Several times, during Sami's PT appointments I would ask, "What is wrong with Samantha? Why can't she do what other kids can do?" And I would always get the same reply. "There is nothing wrong with her. I have had much worse." But that is not what I asked. There is always a worse. But anyway, she would proceed to explain that she had a lot of children with Hypertonia that had to have treatments done every week and so on. But that is NOT what I asked...
From the time Sami started crawling, Natalie noticed her feet turned out slightly. However, she attributed it to just being a new crawler. Finally, when she started cruising, Natalie noticed it got even worse. Samantha would walk on the inside of her feet and on the back of her heels. And when she started standing, her feet would sort or bow in and she couldn't keep balance.
Natalie's first attempt to correct this was orthotics. They were small inserts that went in her shoes and supported her foot because she has no arch. She wore those for a month or two, but they just weren't working.
So Natalie referred her for an appointment at PPS Orthotics and Prosthetic Services so that she could get leg braces. Oh NO! All I could think about was Forrest Gump. Everybody was going to laugh at her and I wasn't going to be able to do anything about it. I worried for days. I wanted her to have them. She needed them. But I didn't want people to stare at her-even if she is still just a Baby. Then Natalie noticed that most of the problem was in her ankle muscles, so she ordered her to get ankle orthotics instead.
We walked in the door and it was like no place I had been before. There were prosthetics displayed everywhere. And older people filled the whole front of the waiting room. Aside from the fake legs hanging on the wall, it was very...plain. They finally called her back and tried to get her to cruise so that they could see her feet. He also felt around her legs and had her stretch and tested her reflexes. The doctor decided her definitely wanted her to have the orthotics, so he cast her feet. She didn't like that at all. She screamed for a long time until she finally accepted it. The rest of the time, she just stared at me. First he took this paper and painted over it with a solution that looked like glue. After he covered her whole foot and ankle, he waited for it to dry. Then he took a blade and sliced down the middle to get it off her foot!!! I was so scared!
He went through some papers on her and asked if we had any questions. So, I asked him why her feet did that-since Natalie always seemed to avoid answering me. And he went on to say-very nonchalantly that, "Of course you know she has Hypotonia..." After that I didn't hear much since I DIDN'T know that! Nobody ever told me that! So I started shooting off questions. What is it? How do you get it? How do you know she has it? He explained that it means she has VERY little muscle tone and that she WOULD grow out of it at about age eight. The reason, unknown, since she has not been diagnosed with anything more serious. And when he felt around her legs, he could tell most of her muscle tone is weak on the lower half-trunk down. This made me so angry. Natalie had been her therapist for almost a year. How do you miss that? How?
She went back for a follow up a few weeks later and they put the braces on her. They showed us how to get them in her shoes and once I looked at it, it wasn't so bad. Samantha took it pretty well. She fought it a little, but it didn't take her long before she thought of it as normal.
It breaks my heart when I think about all that she has had to "accept." She Loved her braces. She begged to put them on. And she still likes her Thick It. When she is thirsty, she will get the huge can out of the bottom cabinet and say, "A Cup?"
The First Picture is the molding for her foot and the Second is an image of some inserts, but not hers. And the Third picture is a pair of Orthotics-not hers again. Hers were white with a pink strap. I will try to post pics of that later. I keep them tucked away in her memory box since she doesn't need them anymore.
Here are some links about Hypotonia.
http://www.nlm.nih.gov/medlineplus/ency/article/003298.htm
http://www.childrenshospital.org/az/Site1106/mainpageS1106P0.html
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