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JoJoGee
member
Pity Party for One Please
JoJoGee
member
We had a routine visit with Lily's CP doctor today. She examined Lily and couldn't say enough about how happy she was with Lily's tone. Then, I made the mistake about asking where Lily would fall if she were to be rated against the Gross Motor Function Classification System for Cerebral Palsy (GMFCS) - something I just learned about. On a scale from 1 to 5, with 1 being very mild, and 5 being severe, the doctor said Lily would be a 4.
A 4! I couldn't believe it! So, when I got home, I did a little more research and, at this point, I tend to think Lily is more of a 3. But, to be honest, that isn't much better.
Whether or not Lily is a 3 or a 4, what it boils down to is that Lily will, most likely, never walk without an assistive device... or maybe, never walk at all.
Of course, you could say that the GMFCS is more of a guideline than a predictor and that the fight is far from over, but I still feel like a small part of my naivet?, and hope, has been taken away.
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Re: Pity Party for One Please
You know what? Hearing that sucks. I don't have anything else.
Our physiatrist (at a world renowned hospital with about 30 years of experience) said that tone is not a great predictor of a child's ability to learn skills.
DS1 has SEVERE hypertonia. Our physitrist (who sees thousands of patients a year for 30 years now) has never seen a child with tone so high at his age or at DS2's age. He said the biggest predictor is of what they can learn. If a child can sit unassisted by the time they're 2 they have the greatest chance of being able to walk unassisted. DS1 learned to sit at 18 months after a series of botox and he is now pulling to stand and cruising furniture.
His tone is so severe that most doctor's said he would most likely never get past rolling over.
Please don't accept what Lily will or won't do based on her tone. She seems to be a determined little girl who is going to be odds and show you what she is capable of.
A friend of mine was sent home from the hospital with her new baby for the baby to die at home. That baby is now 5, walking and even dancing! Don't let anyone make you think your child is limited in potential. You miss all the shots you don't take, and its important that we go for every shot, every day. Attitude becomes reality, so don't let anyone get you down.
Thanks everyone. I know that this is not the worst thing that could happen to my family. And, I know that we are blessed in many ways. Sometimes the negative thoughts and emotions just take over and you have to voice them somewhere. I appreciate all of you responding.
Today is a new day!