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Monday, June 23, 2008

Kindergarten News and Summer Plans

As some of you know Roxie graduated from ESUCP on June 7th. We have an awesome cap and gown shot of her. And yes, we were the crazy parents with the video camera out. I realize it is only a pre-school graduation, but Roxie has come so far and gone through so much so to us it is an exciting milestone that deserved celebrating! Just the day before the graduation we met with Charlotte Mecklenburg Schools to determine Roxie's placement in August for Kindergarten. The meeting went much better than expected and ended with Roxie being assigned to Metro School, which is what we wanted for her. It is the only CMS school for kids with severe special needs. Otherwise she would have been in a special needs class (called a SAC class) within a typical school. We feel at this time she needs a separate setting that has as many resources and experts as possible and we felt Metro could offer this. They have all kinds of great resources, experienced & dedicated teachers, a respected principal, and even two indoor pools! We are so excited and feel relieved that this process is done.

Roxie continues to do very well. She's practicing her crawling every day and will even pull up onto her knees. She's doing much better in her walker and seems to really get that she can move around and shows excitement at her newfound ability. Roxie also is communicating more consistently, has been vocalizing more, and has a few new sounds. During the summer on weekdays and some Saturdays Roxie will work with Farrin (her CAP worker) at home. Farrin has been doing a lot of work with Roxie using switches, which could be a valuable learning and communication tool for her at school in the fall. One of Roxie's favorite summer activities is playing at the pool. She loves the water and will float around happily for a few hours. She even experiments with pushing up to stand as she floats around the little pool, which is less than two feet deep. Phelps and I think that her recent development may be due in large part to the CoQ 10 supplement she started taking in late February to help treat her Mito. It is so exciting and gives us hope!

Our summer is full of appointments for Roxie, both weekly therapy (PT, OT, Speech, and ABA) as well as appointments with specialists. Tomorrow she has her first appointment in nearly three years with Dr. Bugaiski, a Developmental Vision Specialist. He looks at how the eyes and brain interact. She'll see him again the following two Tuesday mornings and then we will get a report at the third appointment detailing his findings and discuss the possibility of vision therapy for Roxie. The first week in July Roxie will see another eye doctor, an optometrist -- the more typical variety of eye doctor who will look at her retina, cornea, ability to focus etc... And in just a few days Phelps and I fly to Indianapolis for the Mitochondrial Disease Symposium where we will listen to the nation's specialists and thought leaders on Mito. That is very exciting and we hope to learn a lot as well as enjoy a few nights away. Then in mid July we are taking Roxie to see Dr. Shoffner in Atlanta to finally discuss his findings face to face. He is the Mito specialist who diagnosed Roxie last November and we hope to find out more results from his DNA testing and perhaps discuss adding another supplement to Roxie's Mito cocktail. Roxie also has to have lab work done and I've already taken her in twice to have the blood drawn to no avail. The first time they didn't have the right tube for the CoQ10 lab and the second time she was too dehydrated and after what seemed like 10 minutes of holding her down while she sobbed they had to give up with only a small vile of blood obtained. I'll take her in for another try next week. Uggg!

We'll keep you updated as we get results and info from our appointments.