As you guys know, Little Red had some definite Cerebral Palsy symptoms diagnosed nearly a year ago. This evolved as she began to move and with the discovery of her other conditions (namely her multiple spine conditions).
RECAP OF HER CEREBRAL PALSY SYMPTOMS
- Spasticity in LR’s left thumb (we still work with an Occupational Therapist but it seems to have corrected);
- Spasticity in her left leg. This means she has muscle stiffness and it doesn’t relax too well;
- Hypotonia in her right leg. This means her muscles are too relaxed, hence she walks on the inside of her foot and has no arch.
The spasticity in her left leg is quite noticeable at times. We always called it the “weaker” leg until the concerns with her right one became apparent. Her toes are often in a tight curled position and she can lock her knee into place. We used to call her The Ballerina because her natural pose was to have a straight leg and pointed toes whenever we would carry her.
Her right leg is now considered the “worse” one. It’s almost on a right angle and she walks on the inside of her foot. However this can also have curled toes sometimes. Since we introduced the better shoes with her orthotics, she walks more confidently. Without them, you can really tell there is an issue and she often looks like she is about to lose her balance.
NOT ACTING LIKE CEREBRAL PALSY
Our physiotherapist said it in a nutshell when we were at the hospital earlier this week.
Little Red has all the symptoms of Cerebral Palsy, but she doesn’t act like she does”.
Without context this statement actually sounds rather good. But what she actually meant is that you would expect Baby Bear to walk on her toes due to the tightness from spasticity. She doesn’t. She also has equal strength in both legs and ankles and can “lead” with both.
I’m not too sure what this means in the greater scheme of things, like, could we access a Cerebral Palsy organisation for help because they understand these kind of symptoms? Or do we still have to wait for the puzzle to be put together before we really know what to do with it all?
We’ve accepted the reality that Little Red will always have these issues with her legs. After all, her ailments are not really something you could “fix”, it’s more of a management thing. The early intervention she has received has undoubtedly helped tremendously.
We’re expecting LR to not be as agile or steady on her feet as she grows so we are seriously considering adding the necessary hand rails to our bathroom and on any steps throughout the house. I believe orthotics combined with supportive and specific shoes will be a way forward. We may also need to involve a podiatrist at some point.
The unbelievably positive thing in all of this though, is how it hasn’t really hindered our beautiful daughter at all. She can largely do what Copperhead does, she just does it in her own way and at a slower pace. I have no doubt she is, and will continue to be, an inspiration to many people who meet her or follow her story. Her personality is naturally determined, playful and placid. She doesn’t get frustrated if she can’t initially do something, she just keeps trying until she can. I honestly don’t think there would be much in this world that could stop her.