Cerebral Palsy and Botox

Cerebral Palsy is still new to us. I feel like when Nichole was 5 months old I knew a lot about Down syndrome, but now that Nina has been with us for 5 months I still feel pretty lost in my knowledge of Cerebral Palsy.

Apart from adoption, the biggest hurdle for us has been her mobility issues. The first time we saw a physical therapist we were told they expected her to be doing worse since Nina had never seen a therapist before, while at the same time, our therapist had never worked with a child that was as hard and tight as Nina. Sometimes trying to stretch her is like trying to bend a block of wood by just pushing on it.

Even now, after 5 months, stretching her requires a lot of strength. There are times I cannot even flex her feet with my hands. I place her foot on my shoulder and lean into her so I can get her foot to flex.

Nina's Cerebral Palsy is called diplegia (the first picture in the diagram below.) And while her arms and hands are somewhat affected, she has full use of them and this rarely affect her movement. The times where her arms and hands are affected are when Nina is scared, nervous, or angry. During these "episodes" all her body is affected and as I have described it before, she turns into a wooden board and has no balance or control of her body. At these times she aquires a "curled" position. However, this seems to be more of a behavioral issue or a coping mechanism.
(If I am not using the correct terminology here, please correct me! As I said, I am just learning about CP.)

We have a great walker and we have great AFO's (leg braces.) The problem is that no matter how often we stretch, her legs and feet are still very tight and curled. Her AFO's work for a while, but after a period of time, her feet will shift and regardless of the many straps, the heels are up and we have to take the AFO's off in order to reposition her feet. Something that requires time as it takes a while to be able to stretch her feet to a 90 degree angle and we both can only do it so many times a day. As you can see, her heels are really "up there."

In light of this, we are going to try Botox. Botox has been used successfully in individuals with Cerebral Palsy when injected in the affected areas.

Cerebral palsy is a result of brain injury. What Botox does, is "numb" the nerves that signal the brain to contract. Because of the injury, the brain is not able to signal back telling the legs to relax. Once the nerves are "numb" there is no signaling to the brain. Does that makes sense? If it does not, then welcome to my understanding of this! I told you, I am just learning!

Needless to say, we are hoping that the Botox injections will help Nina. We have explained to her that it might hurt a little but it will help her heels touch the ground. "Like Ellie and Nichole?" she asked.

But Nina is a smart little girl, she asked one more thing, "Nina walk?"

We hope so, we hope that this will be a step forward towards achieving some independent mobility. We are well aware that walking independently might be a few years down the road, but we also know that she is capable of moving around with her walker, and eventually maybe just by using crutches.

Nina wants to walk like her sisters. Personally, I cannot wait to see all three of them dance together, all three girls with their unique abilities.