Hypotonic Cerebral Palsy

So it's official. We received Edwin's official diagnosis from the neurologist today. We saw him back in '07, when Edwin was an infant and didn't have many measureable skills and was there dxed with transient dystonia. Now he is two and his low tone has not resolved and it impacts all of his developmental skills.

It was clear the moment the neurologist looked at Edwin that he has cerebral palsy. He was gentle in his explanation, but did straight out explain that CP is due to brain injury that occured at birth or closely thereafter (Edwin, Sr needed to hear this explantion and I was pleased he explained it in simplistic terms, as hurtful as it was to hear.) He doesn't believe it was from his grade I/II brain bleed, but rather hypoxia or low blood pressure or a combination of both either at birth or during his NICU stay. Given the fact that he had extremely low desats and needed to be bagged many times, it is obviously unclear exactly when the injury occured.
He didn't feel an MRI or CT scan would be helpful, as it is clear there is injury present and given his birth history we know why.
He said that complete hypotonic cerebral palsy is generally characterized by *more* developmental delay, which I wasn't aware of. He also said it will make it harder for him to walk given how low the tone in his trunk and legs are. He said he was impressed with how well he uses his hands, but that his hypotonia in his trunk and legs is quite pronounced. He said he can also see a lot of low tone in his face, and of course his mouth, evidenced by his drooling. He also does not believe Edwin will develop hypertonia. Although said it would actually be helpful if he gained tone in his legs to help with walking.
I asked about the possibility of seizures and he said it is possible, although not likely, but that if we see anything concerning that he would order an EEG.
So of course it was a difficult appointment, but one that I was prepared for. Edwin, Sr on the other hand was hit a little harder and was almost teary. Hearing your child has brain injury that will impact them physically and mentally is a huge blow. We mourn for the struggles Edwin has been through and will continue to face, but we are extremely proud and grateful for our amazing son.


We know the future is uncertain...Edwin is still not using verbal language, and seems to lose receptive language skills he once had (Edwin clap your hands, where's your nose, etc. are now ignored or not followed.) The neurologist didn't feel it was appropriate to make much of this, but of course it's something we are keeping our eyes on. Edwin has a lot of therapy and we do all we can to maximize his potential, all while keeping things fun.
I'm trying to stay strong, especially since I knew this was coming, but there was something final and jolting about officially hearing that your child has irreversible brain damage that will impact him forever. I only hope the world will see beyond Edwin's disAbilities, and see him as the amazing boy we love so much.