Wednesday, May 21, 2008

wow an update from the Motts

Hello to all. Just wanted to update you on Cameron. She is doing really well and it is truly hard to believe that we are almost a year out. Cameron in thriving in school and has had a great year in her Kindergarten classroom. She is gaining more independence each day and I plan to give this special attention over the summer. She is reading on grade level, adding and subtracting, writing and is very verbal and descriptive when talking. Again, we have been very fortunate to have such a great group of teachers, specialist and caregivers at school. Thanks to you all and thanks to Mrs. Kay for advocating so much on Cam's behalf.

Cameron still has an intensive therapy schedule, but we just got the word today that she will be cutting back one hour in PT. That one hour is precious and we will take it. She is making lots of progress in all areas but still has some work to do on that left arm. Cameron's OT's and PT's have been working to get her a SAEBO FLEX. It is a really cool splint that looks like a mechanical hand and should build her strength and increase her use of this arm. This is so important for many reasons. Mainly to increase the hand and arms function as a helper hand and to give her more awareness. Cameron falls alot and when she does it is never good for that left wrist. She has had one break and several other close calls.

We will have a busy summer with trips, camp, and doctors appointments. Cameron will be attending Victory Junction Camp in August. This is a camp for children with special needs and each week is designated for specific disorders. She will love this experience away from home and we hope this will be a time to foster independence as well. We are also planning a trip to Pensacola Florida with Casey's extended family and my mom and niece. This should be a great trip as well. In July we will head up to Hopkins for a doctors appointment and re-evaluations at KKI which is where Cameron did her rehab. At this time they will do cognitive testing as well. I know she has made great gains and I hope it translates during testing.

On another front there are several families going through the stresses on Rasmussen's Syndrome. One of which is in NC and recently had the surgery at Duke. His name is Noah, so keep his family in your prayers. Another little girl named Jessie Hall is going to have the surgery at Hopkins on June 11th. Jessie's story has been on CNN Headline news and hopefully they are going to do a story on Good Morning America or possibly People magazine. So many people have already seen this and it brings more attention to this disorder plus what these kids are really capable of after such a drastic surgery. So be on the lookout and lift up this family as well.

I think that is it for now, we are counting down the days till summer 13 to go. Love you all. The Motts.