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.


Jayne said...

What a great post, just full of smiles and hope.

Looking forward to seeing you this summer!!

Anonymous said...

The Johnson's are so happy for you guys. Thanks for the post on my blog as well. I am excited to see things are going so well and there is a reason for everything...


Jessie said...

We are so happy to hear that Cameron is doing so well. I hope that the Saebo Flex does wonders for her arm and confidence. We appreciate the update on her progress. We received a nice email from your mom today. It was very nice of them to pass along their well wishes.

Hopefully we will get to meet you guys some day.

The Hall Family (Cris, Kristi, Matt, Jake, Josh, Jessie)

andrea said...

SOOO happy to hear that things are just plugging along for Cameron. It's such a miracle and I'm so thankful that I can be a witness to it.

Anonymous said...

Love the updates!
Love you guys,
Stacy Nicholson

Daniele Kay said...

Thanks Shelly for your kind words. You know I love you guys and Cameron's story is such an inspirational one. I am so happy to hear that you are finding time to network with these other families who are going through the same things as yourself. I know that you will be a wonderful support for these families. You are such a strong person and a phenominal mother.

610pawn said...

I am so happy Cameron is doing so well. What a blessing. Its so wonderful thing to see how great she is doing. :0) I hope to hear from you soon. My new email is Love to you and your family. Melissa

Mary Poppins said...

You are so beautiful and I am grateful to hear how well you are doing! Thanks for letting your Mommy spend time writing about your successes. It gives the rest of us hope who are waiting for Jessie to break out and stun us all! We love reading about how well you are doing! Keep up the good work!
The Jennings Family in Aledo, Texas

Anonymous said...

Hey Im stumbled across your website and Im glad I did.I have daughter who was born with cortical dysplasia and schizencephaly in her left temporal lobe. She began to have infantile spasmsand complex partial seizures at 2 months old they were refractory to medications. We tried the gold standards for it with no help. She had a hemispherectomy in Detroit Michigan with Dr. Chugani. She is 9 months old now over all she is doing great, but Im concerned about her speech, she is not babbling or making sounds other than laughter.She has hemplegaia on her right side. We live 20 mins. away from Raleigh, NC.My daughter is now 1 year old and off all medication. GOD BLess. my email is if you would like to talk. said...

Hello, we are so glad to hear that Cameron is doing so well! Blogs like this help many others going through the same experience. I am a friend of Kristi and Cris Hall whose daughter Jessie had her hemispherectomy on June 11 The Hall's are in the process of setting up The Hemispherectomy Foundation - which will be up and running this evening. We would love to talk to you including Cameron in the Foundation. Please contact me if you get a chance. In the meantime, we will continue to pray for Cameron's great success!

Jane Stefanik
Baltimore, MD

Jessie said...

Hi guys,

Just wanted to let you know that Jessie is back home in Texas.

Sorry we missed you in Baltimore. Hopefully we'll see you next year at the reunion.