Busy Week

This week was a very busy one for us. Ben had many, many doctor's appointments at Children's. I'll just fill you in with a few highlights:

Eyes - Ben was due for his 6 month check-up and since he just had a brain cat scan that showed his ventricles were a little larger in size, the opthamologist decided to dilate his eyes and look at Ben's optic nerves. The eyes are usually the first place that show increased pressure in the brain - and Ben's optic nerves looked great. What a relief.

Development - We also saw Ben's Developmental Pediatrician, who is WONDERFUL! She just plays with Ben, asks lots of questions about what he is or isn't doing. I really look forward to these appointments because she is so knowledgeable about CHARGE and developmental issues. She thought Ben was doing some great stuff. Developmentally, Ben is probably in the 9-12 month range, but he is continuing to make progress... so we are happy about that. She did agree with Ben's pediatrician that Botox injections would probably help him out. Botox can be given to people who have a lot of tightness that is inhibiting their daily functions (Ben's legs are so tight, he has trouble sitting up because he can't straighten them). She explained that Ben's tightness is probably due to the stroke he had right before he was born. The part of his brain that is around the damaged area is responsible for muscle tone. His brain is probably telling his muscles to be tight even though they shouldn't be. From what I know about botox, they give injections into the muscles on a regular basis and then cast those muscles in a fashion that really stretches them out. Botox basically relaxes the muscle and allows it to be stretched. We now have an appointment with Rehab the end of the month.

We are also trying to get a new PT. We have been without for a while since we have had trouble finding one that we felt was a good fit for Ben. Through a referral, we found a private PT who is amazing. She did more in her first meeting just gathering information than all PTs combined. The only problem, she isn't in our insurance network. We are praying it works out. Ben really, really needs a good PT.