First off I want to say how sorry I am that a Month has gone by since my last update. WOW how time really does fly by. First we had Donika's graduations which was a HUGE success for her. She had a lovely day of weather, celebration and over 100 family and friends came in celebration of her accomplishments. Then my exchange students parents was in town for a week and it was a beautiful week also. We did many things with them it was a very nice week. Lots of fun. I still have a sore neck but some days are way better than others.
Brianna ... WOW has she been busy also. We have her new hand splints.. a very cute hot pink color with purple straps. She will get her new foot braces June 23. And she got her new glasses. When I put them on her, her eyes did not stop she was looking EVERYWHERE. I also bought a sun clip to put on them and I took her for a walk down the street so she could see everything she wanted to and the sun was not a factor. We seen her Orthopedic specialist on June 11 We are now looking at preparing for back surgery for her scoliosis. We will see the Anesthisiologist & pediatrician in a couple weeks then we will go from there on when the surgery would take place. Possibly the end of July. This is a very high risk surgery and so far one of the toughest decissions I have had to make yet. I did consult with Dr. Leone one of the main Canavan Disease researchers whom done Gene therapy on Brianna and she feels it would be of benefit for Brianna and thinks we should go ahead with it. I was happy to hear someone be straight with me about the subject because everyone I tried to talk to about it would just tell me that it is a tough choice and they did not envy me in my possition of having to make it. Brianna will meet her new Neurologist on June 16th he is 2 hours from home but at a very good hospital. Nation Wide Children's Hospital in Columbus Ohio. So yes we drive 2 hours for her Gasterologist & Orthopedic specialist in Cleveland & now 2 hours for this doctor. The doctors that specialize in these areas near us are just not as good in my opinion as those in the bigger cities.
School is out for Brianna for the summer so now it is my turn to do all the fun things with her. So far we have been on many walks and we took a day off and went to the zoo. Even with lotion on she got burned on her face it was bad and I felt horrible. But all is well now. Her flower bed is all done and looks great we love to sit out and watch the birds eat their food from the feeders out in the bed. They are amazing creatures.
I will try to write sooner this next time and let you know what is going on with her surgery information. Thank you for your continued prayers and support for my Brianna it means a lot to us all.
