Wednesday, June 30, 2010

Arthrogryposis Multiplex Congenita

*Yesterday was awareness day for AMC and we all wore blue.

*Gavin is an AMC kid and has a very classic case.

*Arthrogryposis occurs in about 1 in 3000 live births.

*Some kids have Arthrogryposis combined with another birth defect such as spinal muscular atrophy.

*Though the cause of Arthrogryposis is unknown it is thought that it can be caused by a virus or high fever. We do not know the cause of Gavin's, but we think it may have had to do with a seizure that his birth mom had around 12 weeks of pregnancy. We did genetic testing but thankfully nothing showed up.

*Gavin is affected from head to toe. From birth till he reaches eternity. And I am sorry for him, but thankful for us. We would not have gotten Gavin if he were born "normal". He most likely would have stayed with his birth mom. What would we do without Gavin?

*Gavin was born by emergency C due to meconium in the amniotic fluid as well as a decreased heart rate. He had to have chest compressions to get his heart beating fast enough and then he was life flighted to Sacred Heart. At birth he had a broken femur probably due to the stiffness of his legs and the contractions of labor.

*Gavin's head was flat on one side and had a huge bump on the other. This later required a helmet to help it to grow into a rounder shape.

*Gavin's left leg was folded with his foot touching his body and his knee pointing out to the side. His right leg was turned backward so that the front of the knee touched the bed when he laid on his back, with his foot sticking up in the air. He had clubbed feet, and was so stiff that he wasn't dressed until we got ready to leave the hospital. He has had serial casting, 3 surgeries and splints to help his legs and feet to be in a better position for sitting and standing.

*Right from the start Gavin could drink a bottle, but his jaw is affected and this caused him to be unable to keep a pacifier in his mouth. He has had some difficulty in eating because he gets easily tired and he eats slowly.

*Gavin had an undecended testical that later ended up causing an incarcerated hernia. This led to an ER visit and surgery. He continues to deal with severe constipation and at almost 5 we have yet to even get close to being potty trained.

*Gavin has a bifurcated uvula, which caused many ear infections. He would have a ruptured ear drum before I knew there was a problem. He got ear tubes and has been fine since.

*Gavin has endured a lot of pain and medical treatments. He has at times been fearful of any person looking at him because he was so used to getting touched and stretched and measured.

*Gavin gets frustrated and demanding, he gets difficult and has gone through biting and head butting. He has been so naughty at therapy I have wanted to never go back because of being so embarrassed.


*Gavin is amazing, Gavin is charming, Gavin is adored by so many because he is a smart and determined boy. Gavin has fun with his sisters and friends. Gavin helps take care of his little brother. Gavin makes us laugh. Gavin has inspired sooooooo many people to not take the little things for granted. Gavin has brought out the best in people, in other kids. They see his needs and want to help. Gavin has girlfriends both young and old. Gavin wants to be on the worship team "someday" and Gavin Loves MONSTER TRUCKS.

*Many groups today are doing everything they can to make sure every baby born is "healthy". Well, it isn't possible unless some of them aren't born. That could have been Gavin's fate.

*I am so thankful to Gavin's birth mom for giving him to us. She gave him willingly, though she was young in mind, she wanted the best for him. And I am thankful to God. He gave him to us knowing the rest of our story, and He wants the best for us. I am thankful for all of you, our friends and family. You have been our support and you have helped make it possible for Gavin to participate in so many things.


  1. We are so glad you have Gavey too. I am honestly not sure what we would do without his charming personality.

    Writing thru tears, I am SURE Gavin will reach all his dreams, one day. I am just humbled and will be sitting on the edge of my seat, excited to see, how. Because I know its only a matter of when.

    We love you guys!

  2. WOW Stac thanks.. I too Crystal write this through tears.. His older sisters and Aunt Stacy LOVE to sing... the thought that one day they will sing together, makes me smile! Thanks for your updates. I am working on the courage to start blogging so that others can keep up with us too. Until then its short tid bits on Facebook... Oh and I have gotten lots of help from Amy!!! thanks :) Happy FOURTH!!

  3. You are all such a blessing...