Sunday, July 27, 2008

"Mommy! Arthrogryposis!!"

Last weekend, Evan and I had the awesome opportunity to attend the Arthrogryposis Multiplex Congenita Support (AMCSI) Convention in Dublin, Ohio. It was an incredible experience for both of us. Because Evan has endured a barrage of therapies, doctors appointments, surgeries and home nurse visits (among other things) since he has been home, he has become very familiar with the term arthrogryposis and how it relates to him. When we walked into the convention last Friday and he saw all of the other kids and adults just like him, he looked at me and with sheer excitement exclaimed, "Look Mommy! Arthrogryposis!!"

We had the opportunity to hear from several doctors/therapists who specialize in Evan's condition which was like a breath of fresh air, because, while most doctor's have heard of arthrogryposis, it is hard to find doctors who have much experience with treating individuals who have this condition. We were even able to consult briefly with one of the doctors who gave us some good insight on things to consider for the next steps in Evan's treatment. As a result, we have applied to Shriner's Children's Hospital in Philadelphia, Pennsylvania and hope to have our first appointments there in the near future.

Evan had the chance to play baseball at the Miracle League Field in Columbus and even got to do some painting! We also enjoyed an excellent concert by Mark the Marvelous Toy (this was one of the highlights for Evan who LOVES music)! We made lots of new friends, including several people who live in our neck of the woods and we look forward to cultivating some lifelong friendships.

I am amazed at the new motivation Evan apparently gained from attending this convention. While he has always been a hard worker in terms of pushing himself to achieve mobility and independence, he is now pushing himself ten times harder. He has come further in the last two weeks, than he has in the last two months! His new confidence really is inspiring!

I am also very grateful for the opportunity that Evan and I had to spend some one-on-one time with each other outside of a doctors office, hospital or therapy setting! It was wonderful to be able to focus all of my time and attention on him and to be able to learn about how we can help him meet his full potential. It was truly inspiring to watch all of the other children and adults with AMC as well and I walked away from the convention with an even stronger conviction that there will be no limits to the things that Evan will do!

Next year, the AMCSI convention will be held in Philadelphia and we are looking forward to making it a family affair!

Happy to be at convention!


Have I mentioned that Evan LOVES to paint and color!?!

Enjoying the Marvelous Toy concert!

LOVING every minute of that concert!

Evan and his new friend Isaiah

Mommy and Evan

You might be wondering what the rest of the Rieben family was up to that weekend! They were all enjoying a fun time at home with daddy and you can read all about their zany adventures on Richard's new blog, Eastern Impact!


mommajeane said...

That is a wonderful place... we have taken our Luke who has arthrogryposis and Mya who was paralyzed from polio there. Shriners are wonderful people. We saw and still keep in touch with Dr. McCarthy there. Luke's case was pretty severe and he was ok with us going to The Rubin Institute of Advanced Orthopedics- Dr. Standard in Baltimore. Dr. McCarhty is a very sensitive doctor and still is interested in following Luke and Mya's progress. The other positive is it is all free... this is totally amazing and what a blessing to families like ours. Let me know if I can do anything ... visit my blog and read about Luke and Mya. We are a 3 hour drive from there and we were driven, given lunch and anything else by the Shriners we needed. If you live further they will even put you up for the nite.

Charity Brown said...

I'm so glad you guys had such a great time!!! That last picture of Evan and you is incredible!! He looks exactly like you!!!

schoolmother said...

What lovely pictures. Thanks.