Journal

Wednesday, May 7, 2008 11:11 PM CDT

Welcome to our website.
We have been doing pretty good. The girls have been doing physical therapy once a week at the hospital and 2 times a day at home. They get tired very easy. The therapy is for their pain in the legs, back, and hips for Jacy and the neck, back, and legs for Jo. With their symptoms and their muscles and bones they were told last Thursday that they will probably do physical therapy the rest of their lives. Which is mostly going to done at home.

Appointments, appointments, and more appointments.
We have had several appointment s lately. It seems never ending, but it typically gets like this every 6 months, minus our appointment s for whatever is happening at the time. An example is we had 5 appointments in February, 10 in March (including 6 after Jacy’s ear surgery), 14 in April, 9 so far in May, and 7 so far in June ( not including any after Jacy’s surgery for her Pharyngeal flap). I had someone tell me the other day in general conversation, wow and most people think that once a year is bothersome. I just laughed and said this is our normal.

Speaking of Jacy and the new surgery in June, she will have her 5th pharyngeal flap surgery. The first one when she was 4, then she had 3 repairs over 3 years after that. The surgery kept failing and has caused her many problems over the years, for one Jacy has a very small space in her throat area. After the ear surgery and release of the previous flap mess, in hopes to help her breathing, her speech declined enormously. I was so disappointed. We had been in speech (formally) with both girls since age 3. After the last repair in 1998 Jacy’s speech got to her maximum potential, in 2002. I was hoping for better, but she is all for the surgery she wants her speech back. She has also had some swallowing issues with the hole back there being so big. Now you may ask what will make this one different? Well for one it has been 10 years, and this surgeon is going to release some other areas in her throat to enlarge her breathing area, and then build the flap.

I am sorry this has been so long. I will update again after some of our other appointments.

Thanks for stopping in!
Krisstina, Keith, Jo, Jacy, and Cameron

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