Nina's Cerebral Palsy is called Spastic Diplegia. In simple terms, it means that Cerebral Palsy affects primarily her legs, (although her upper body is affected as well). Nina's left side is also much stronger than her right side.
Nina got her AFO's (leg braces) after being home for 4 months. We had to really stretch her feet and calfs in order to get her AFO's on. They stayed on for a short time, but she was so tight that her heel would begin to creep up regardless of the straps on the braces. When this happened, she was done with her AFO's, crying and asking for them to come off. It was very painful.
Her feet not staying in her AFO's is what led us to doing Botox on her calf muscles. Botox was our little "miracle" to get Nina's feet to stay in her braces. Although the Botox has certainly worn off from her calfs, we were able to "break in" the AFO's, and she can tolerate them for up to 4-5 hours a day.
But Nina's is really tight, and there really is no easy fix to her spasticity. If you look closely at the pictures bellow, you will see that although Nina is wearing her braces, her feet are not touching the ground (not even close!) and her knees are bent and turned inside. If she gets really tired, her knees touch and her feet are spread wide (and upside down V).
Nina had been wearing her braces all morning by the time I took these pictures and the video. You probably heard that she was complaining about it a little bit. So I took her braces off. You would think that after a few hours being stretched by her braces that her heels would be closer to the ground, but that is not the case. She is back on her toes as soon as the braces come off (although the left foot is not all the way up!)
I'm one of your follower. I am so proud of all the things you did for Nina just to get her out of where she was confined for years. You're the best mom. Nina is so lucky:))
ReplyDeleteOhh girl, thanks for sharing these! I had no idea what you go through with her, you are such a good mom!! Let's chat soon!
ReplyDeletesweet nina!! listen to her talking!! so awesome!! Rylee has a boy in her class with CP and he wrestles.. he is doing really good! actually watched him pin a kid the other day!! the whole gym was so excited!!!!
ReplyDeleteI have a question: Is her extreme spasticity and lack of flexibility due, in part to her CP being ignored (more or less) for the first few years of life?
ReplyDeleteIn other words, say someone had been working with her intensively from day one. Is it likely that that would have resulted in an improved condition today? Or is it one of those issues that can only be significantly improved through surgeries and stretching over the course of years and decades?
-Madi
I am a 27 year old male born with "Mild CP" and can tell you I have had adductor release and Achilles tendon release on both legs when I was very young. Physical therapy and stretching was very important. Believe it or not I have been taking a magnesium supplement daily for over a year now and it has helped with the constant contractions of my leg muscles. I am very happy that my parents put me through the surgeries in my early years. It might not be for everyone; however the surgery's with proper physical therapy helped change my life.
ReplyDeleteNina is very lucky to have a mother like you.
ReplyDeleteWe are even more lucky to have her in our family :)
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