Tuesday, September 09, 2008
Back to school a success
There will be a show airing this week called The Doctors. On the 11th the episode will be featuring Jessie Hall. This is another young lady that had a hemi at Hopkins in June of this year. They are a wonderful family and I hope that you all enjoy the episode. That's all for now. Shelly
Wednesday, August 06, 2008
Our Busy & Wonderful Summer of 2008
Video of Saebo Flex--go Cams
Beach Time! We love Florida and the Gulf Coast!!
Watching fireworks on the 4th of July with cousins at the beach. Happy 4th!!
At Gigi's house before heading to Baltimore for Cam's follow up
Girls acting silly at the aquariam in Baltimore....
Heading to Victory Junction Gang Camp!!!!
Cameron's room at camp--purple stock car bed and gas pump!! Go Pirates!!!
Vegas baby!! Outside of Cameron's camp house....
Another picture of Cameron's casa at camp..awesome place for sure!!
We picked Cameron up from camp today! We had not seen or talked to her since Sunday. She fished, rode horses, went bowling, did crafts, "rode" in a hot air baloon, went swimming, made friends, and had an super awesome fun time. On the way home she said "I wanna go back to camp!!" She is in bed early tonight so it was a full week of fun & games for her for sure. Thank you to the staff at Victory Junction for taking care of our sweet angel!!!
Here is their website if you are interested in learning more about the camp or if you would like to donate to this wonderful place for special needs children to have a week of just fun:
http://www.victoryjunction.org/aa_home/index.html
Tuesday, August 05, 2008
Victory Junction Gang Camp
We also returned from a trip from Baltimore week before last and it was amazing to believe that it had been one year since Cameron's hemi. We saw all of her doctors and they were very excited with Cameron's progress. They were also very excited about the progress she is making on her left arm. We still have a long way to go but she is using a SAEBO flex (device made for stroke patients) that allows her to do exercises to strengthen her arm. She also did Neuro Psych testing and analysis. This was really exciting b/c Cameron has a Normal IQ. IQ's are done on a bell curve and hers is within the normal range. What does this mean for Cam's? That she will never have an educator believe that she is not capable. We still have our challenges cut out for us. Mainly with attending or focusing for longer periods of time. The Neuro Psych bascially explained it like this. Cameron has less brain that she is utilizing for the same things that everyone else is doing and this can make her tired. Works for me. It is helpful to understand why Cameron is the way she is. ---------Amazing.
School starts at the end of the month and I will miss all of my time with the girls. They have been quite entertaining this summer and we have had so much fun. Caroline our four year old saw a large cross yesterday and said " Hey, that is what Jesus got pinned to". Another funny moment happened when Caroline came running into my room to tell me "Mommy, Mommy, Cameron is going to be a tattletale". "About what" I asked her. "I hit her". Casey promises that he will put up a little video of Cameron using the Saebo and some pic's tomorrow so take another look soon. I am also going to list some blogs of other families who have undergone Hemi's. One family the Hall's have created a hemispherectomy Foundation that benefits children that are going to college or other higher educational training. Please take a look and read the essays of the three scholarship winners. Love y'all. Shelly
Wednesday, May 21, 2008
wow an update from the Motts
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.