We went to St. Louis last weekend for the 4th Annual CP conference, and Jake had an appointment with Dr. Tychsen, who is an Ophthalmologist at the St. Louis Children’s Hospital.
The conference was great. Various experts talked about The role of Botox, Stem Cell Research, Soft Tissue Surgery, Treatments for Dystonia, Baclofen Pump, and many other topics related to CP. There were also teen and adults with CP discussion panels where they talked about how they live their lives and overcame challenges despite of having CP. When a parent asked one of the teens what advise would he give to parents of CP children, he used his pointer which was strapped on his forehead, and wrote out on his communication device “Don’t give up!”. My husband was moved to tears.
My favorites were a group of young girls with CP performing a serious of dance movements, and another group of kids doing adapted Martial Arts. I was over came with emotions when the girls were dancing because some of them were Jake’s age, and they had leg braces on underneath the tights; many of them needed hand over hand assistance, but the volunteers, the instructor, as well as all of us in the audience cheered and clapped for them, and they finished the whole routine. It was a great experience also because were we got to meet and talk to other parents around the country.
Jake’s appointment with Dr. Tychsen went OK. We didn’t get to do some of the quantitative tests I was hoping to do because they had to be pre-scheduled, and I wasn’t aware of that. But what Dr. Tychsen was able to conclude was that Jake’s has no optical nerve or rental damage; his peripheral vision and convergence are fine; he does has a degree of gait palsy, and because of Jake’s various brain abnormalities, he will always have some level of vision impairment. Dr. Tychsen said that with maturity and cognitive development, Jake’s vision will improve. I guess in a way I wanted to hear concrete solutions to address some of his vision issues, but it looks like there is no other way but to keep doing what we are doing.
We went to 