My Story

Bobby is 3 years old, born with Treacher Collins Syndrome. He is very happy, funny, and the strongest boy I know. We are so grateful to have him in our lives.

Journal

Wednesday, June 3, 2009 11:09 PM, CDT


Mondays visit was fine besides Bobby not cooperating with taking X-rays..but they came out ok anyway. Doc says everything is right on track and looking good. Grandpa came with Bobby and I this time. He was in a little bit of awe seeing other patients in the office. I think it was his first time seeing someone else with TCS besides Bobby. Bobby also had a "treat" today and got his first ride on the subway. The trains stopped running due to failed signals at Penn Station. This morning we woke up and noticed Bobby's incision on the internal side was open. He must have scratched it while sleeping. We took pictures and emailed them to Pat (the NP) who showed them to Dr. McCarthy. He wanted us to come in so he could have a look. Bobby's body does not like the device and is causing granulation tissue. Unfortunately its not something that can be stitched up because it will just open up again. We are going to continue the warm compresses and antibiotics. This is going to cause a pretty bad scare...but I'm sure Dr. M will do a good job when the pins come out (July 14th) and get a decent closure on it then...and of course he can have scare revision down the road.

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