Today I will post some pictures from our recent afternoon at the beach on July 4th. Tomorrow we have our appointment with the Spina Bifida clinic at MUSC. This clinic is designed so that a team of health care professionals with extensive knowledge of spina bifida can assess Claire at one time, eliminating the need for multiple visits to MUSC. Claire will be seen by a developmental pediatric doctor, a physical therapist, someone from the neurosurgery department and possibly an orthopedist. The idea is to do a comprehensive evaluation to see what services she needs to be referred for (speech therapy, physical therapy, etc...). I have been told that an occupational therapist will also be there, but we have already been evaluated by one and told that she does not need any OT. Our biggest concerns right now are associated with her urinary issues. While it was not unexpected, it was a little disconcerting to be told of her issues and trained by a nurse to catheterize her without ever having seen a urologist. Unfortunately, the clinic does not yet have their own urologist. They are due to get one by the end of the month but that does not do us any good on Tuesday. I have asked for an appointment with another pediatric urologist at MUSC but have not been successful with this, even though I spoke with the resident on call twice while we were in St. Louis and he expressed that the doctor wanted to see Claire as soon as possible! Apparently, that doctor is now on vacation and can not see us before we have to leave again but the spina bifida nurse said that she would try her best to get a urologist to come down to the spina bifida clinic tomorrow. I hope so. Please pray that all the Doctor's and specialists that see us tomorrow are guided to give us the very best advice for Claire's future so she can have the most fulfillment from life. I don't have to tell you that we think she is a very special little girl and she deserves the best she can have.
My first time on the beach!
Me and mommy in the wind!
Surfer Boys!
Beach Beauty!
No comments:
Post a Comment