Tuesday, December 4, 2007

Arthrogryposis Multiplex Congenita

Several people have inquired about Evan's condition recently and I realized how long it had been since I had mentioned anything about it specifically. For those of you who don't know, Evan was born with a rare birth defect known as Arthrogryposis Multiplex Congenita. This condition occurs in approximately 1 in 3,000 births and effects the joints, muscles and connective tissues in the body, the most significant impact being in the joints. Arthrogryposis can effect a single joint, all of the joints or somewhere in between. All of Evan's joints, with the exception of his jaw and possibly his spine, are effected. His feet, knees, hips, wrists, hands, elbows and shoulder joints are all "contracted" leaving him with limited mobility. At this time he is unable to sit unsupported and has no use of his arms or legs. He can move his arms and legs, ran rotate, can sit with support and we have seen him roll while in his bed. He will likely require surgery for his feet, knees, hips, elbows and possibly his shoulders. He will need intense physical and occupational therapies as well as possible bracing and casting for his legs. In just the short time that we have been with him, we have already seen a huge improvement in his strength (for example, he tired very quickly when we would sit him up during our first few visits. . now he can sit with support for a while without tiring). Obviously we will not know the full extent of his condition until we are back in the US and he has had a chance to be evaluated by specialists, but we do have a good idea of what is involved and what the coming months and years may bring. The biggest question mark lies with his hands and whether or not he will ever be able to use them. He has already found ways around not having use of his hands. . .for example, if you lay a cookie next to him, he will scoot himself over to it and use his mouth and his tongue to pick it up and eat it (anything for the cookie!). He also uses his mouth in place of his hands to "touch" things. For example, he likes to "feel" the zipper and string on my sweater by putting them in his mouth. He also likes to "touch" my hair by doing the same thing!

Like Josh, I feel like there really will be no limits to what Evan can do if he puts his mind to something. When I look at both of my boys, I do not see disability. I do not see children who "can't." I see children who just have to do things differently. Different is good. Different inspires. Different teaches. I see two beautiful little boys who have the potential to do anything and everything they want in this world and I feel so lucky to be a part of their lives, so privileged to be able to watch in amazement all of the wonderful things that they do!

Here are a few pictures from our visit this morning:

I just can't get enough of this little boy! I am going to miss him so much when we leave to go home later this week! Speaking of cute little boys, I also found a few pictures of Josh that we had left on our camera and thought I would share them.


And while I am at it, I can't forget the three little hooligans who gave us the desire to add more children to our family in the first place:

Having these five little people in my life is evidence of the Lord's love for me! What a privilege it is to have each one of them in my life! I can't wait until I am able to post pictures of all 5 of them together. . . .

7 comments:

adoptedthree said...

Thanks for the additional information. I love the part about different as we are all different in our own crazy ways!!!!

Cute pictures!!

Leanna

lynnk@lihgroup.com said...

Having seen where these kids end up after the baby orphanages I was so happy for Evan to read your story. He was truly blessed with an amazing family.

Cynthia Rieben said...

You had provided me earlier with some explanation of Evan's physical limitations and challenges, so it was good to go over it again. His condition touches my heart. I'm encouraged to believe that a variety of surgeries and therapies can increase Evan's use of his limbs. I also believe there will be some miracles along the way.

Thanks so much for more pictures of Joshua -- because I miss him. And I certainly miss Lukas, Jacob and Maren and look forward to playing with them again before long.

Love,
Grandma DD

Mrs. Morales said...

Hi there! I'm the President of a non-profit group for anyone whose life has been touched by Arthrogryposis. But MOST importantly I am the mom of an extra special boy who also has arthrogryposis. Know that we are/ I am here for you if you should need us, for support, questions or just cyber hugs. www.amcsupport.org or louiesmom@amcsupport.org!

Know thought that your family will grow and flourish 10-fold with this new addition.

Congratulations on your son. Watch him closely he'll amaze and astonish you and your family!

Bigmammy said...

I am adopting a little girl from China with Arthrogryposis. She is 3. I would love any suggestions!

Anonymous said...

It's a great thing you're doing for these children, but what about all the homeless, hungry, abused kids in the united States? All the adoption blogs I read are from families who adopt out of America. There are kids in need here that are forgotten because they're not designer babies.

Valerie said...

Dear "Anonymous,"

Might I ask a question of you as well?

What are YOU doing for the homeless, hungry and abused children in the United States? In the world?

Valerie