CP Awareness Month

March is Cerebral Palsy Awareness month. Did you know that some children that have CP also have vision issues. Cortical Vision Impairment is a disconnect between the eye and the damaged brain. The brain is unable to decipher message from the eye - even when the eye itself works perfectly. Henry has CVI.

The Cortical Vision area of the brain is located in the back, near the base of the brain. Brain damage from lack of oxygen usually effects all other parts of the brain before it reaches the CV area.

Henry's Braces.

Henry is being fitted for leg braces today. Why would a boy that uses a whellchair need braces, you ask? Well, there are several reasons.
First, braces will help shape his leg bones. His muscle tone is too strong, and pulls the bone in an unnatural direction where the bones are the thinest and weakest. His ankles could be completely misshapen if not for the use of these braces.
Second, it trains his muscles to pull differently. His muscles are very strong from being in a tight pattern all the time. The braces along with stretching and physical therapy, will help disrupt that pattern.
Third, if these first two things are unsuccessful at changing the patterns and his bones turn to an unnatural position, surgery may be required later. So, doing everything that we can to prevent having his muscles cut, and his bones altered with screws is absolutely key!

I'm having a hard time being brave today. Sometimes, I don't have the strength to wear that "Everything's *Fine" smile. Sometimes, I am sad. Sad for Henry and embarrassingly sad for myself.

Henry sees the anesthesiologist tomorrow. Surgery next Thursday. He has his 'final' fitting for his wheelchair on Tuesday. I think we'll have to add extra padding to the top straps, to ensure his gtube is protected when he's in the chair, which means another 'final' fitting when his surgery is healed.

Then, in January we start the vision stuff. We are still trying to get to the Peds Opthemoligist to get an official diagnosis of Cortical Visual Impairment. It seems that none of the doctors here are qualified to diagnose it. It's pretty clear to me, after reading his Mri, and after seeing his visual responses, that he does have CVI... but we'll need to drive 4 hours to have someone with a string of letters behind their name, to sign the papers. Then we can get Henry on a Visual Therapy plan. Currently, we're sort of winging it, with the little knowledge that we do have. More resources will be available to us with the official diagnosis.

Anyhow, I plan on taking pictures of Henry's fitting today. It takes the sting out of it for me, if I force myself to record it from a visual perspective.

Sometimes, I am not brave.