Saturday, August 07, 2010

Pictures and videos

It has been a while, but I finally have some updated pictures and video:

At the conference, they had these great demonstration bones. This is what a femur looks like with the F-D rods that Molly has. These telescoping rods are designed for kids with OI. They attach at either end, and grow to be twice the size as they were when installed.

Molly with Dr Esposito, our great orthopaedic surgeon.

OI kids on the dance floor with Dr Glorieux. These kids are largely doing as well as they are thanks to his work with bisphosphonates.

I think the bunnies were one of Molly's favorite things at camp. She was patting them every chance she had.

All of the OI kids at camp:

The rest of the OI conference and camp photos:

Camp videos

Molly racing wheelchair athletes in the airport

Playing baseball at friend's house

Thursday, August 05, 2010

Camp Attitude = Camp Amazing!

This has been a very busy month!  We headed out to Portland, OR for the OI Conference on July 7th and had a wonderful time seeing old friends and meeting some new ones.  My parents came to the conference from Maine which allowed Jim and I a bit of time to attend the Conference presentations and visit with the other OI Parents.  Molly was a bit overwhelmed by all of activities and crowd, but I think she really enjoyed seeing lots of other kids in wheelchairs, walkers and casts.

They had a dance on the last night of the conference that Molly and all of the other OI kids especially enjoyed.  This was a highlight for all of us to see kids being kids and allow them to feel like it was a party just for them.

A family out in Oregon arranged for 26 families to go to a special needs camp called "Camp Attitude" for almost a week.  We all headed 2 hours south of Portland on Sunday in a big tour bus.  Oregon is beautiful and our drive down was gorgeous.  Snow capped mountains and evergreen forests all around.  We arrived at camp and all of the volunteers were there to great us and seemed as excited for us to arrive as we were to be there.  We were shown to our cabins, which are all wheelchair accessible as are the bathrooms.  Camp Attitude was amazing!  They prepared for our arrival all year and seemed to think of everything.  They had wheelchair swings (manual or power wheelchairs went right up on the platform and the kids could swing in the comfort of their chairs), which was definitely one of Molly's favorite parts.  On Monday Molly got to ride a horse for the first time.  I wasn't sure that this was going to be something Molly could do, but they were so well prepared and it was done in a safe way.  She rode the horse named Goliath who was huge and slow a perfect match!  They rigged up a weight belt that they attached to the saddle to give the kids support and safety to ride by themselves.  This was a wonderful moment for all of us.  She has been asking to ride a horse for over a year and I wasn't sure it was ever going to be possible.

The next day we went to the lake and Molly got to ride a jet ski and go tubing behind a boat!  She loved both, but I think preferred the tubing because we could see each other and talk a little bit while we went around the lake.  The tube was giant and could seat 3 adults.

Each OI camper was assigned a buddy.  Allison, Molly's buddy, is a high school student and was wonderful with Molly.  Almost all of the other parents went off on their own and let their kids be with the buddy, but because Molly is only 4 and so fragile we didn't think this was a fair expectation of a high school student.  Most of the time Jim let me talk with the other mom's and he stayed with Molly.  I think they are going to have the camp again next year and hopefully in the next few years Molly will be old enough to go off on her own with her buddy.

The next day we got up very early to get ready to go up in a hot air balloon!!  They had a wheelchair accessible basket which was wonderful!!  It was tethered and went up about 40 feet, but it gave Molly the experience and she felt extremely safe.

I will type up the rest of this later...