Monday, December 2, 2013

About arthrogryposis (AMC)

Today I wanted to explain a bit about Tavin's medical needs. I am by no means an expert, but I've read quite a bit and I will do my best, ok? Here we go.

Tavin has a medical condition called "arthrogryposis multiplex congenital". Memorize that and you will sound really smart. Let's just use the abbreviation for it and say AMC ok? Much easier. AMC literally means "curving of joints", and is used to describe joint contractures accuring in two or more areas of the body (that's the "multiplex" part), that were present at birth (that's the "congenital" part) It can look different in different kids, often affecting all four limbs, but in Tavin's case it only affects his lower body, primarily his feet, causing club feet. It likely also affects his knees to some degree, and possibly his hips, we just don't know for sure.

 Had Tavin been born in the states, treatment would have started within weeks of his birth, and it's likely he would have been only mildly delayed in terms of crawling, walking, etc. Since he did not receive treatment, he is currently unable to walk, and is living in a crib. Living in a crib. I don't mean sleeping in a crib, that's normal for an almost two year old, but actually living in it for most, if not all of each day. Because he has had very limited interaction or stimulation it is very likely he will be delayed in many areas such as speech, ability to chew, play with toys, show empathy or affection, will likely become over stimulated easily, and may not desire or enjoy affection given to him. All of these things are not because of any medical need he was born with, but because he has not received the loving interactions that a baby would normally experience in a family. Kids need families.
We anticipate that he will need a variety of treatments for his AMC when he comes home, including leg braces, serial casting (to help straighten affected joints), possibly surgery to clip shortened tendons and lots of physical therapy. The good news is that treatment of AMC is very successful, even starting at two years old, and we have every reason to believe he will be walking and running in a few years. 

Hopefully that answers questions you may have about our little guy!

In other news, we are in a holding pattern for a bit as we wait for our completed home study. Once we have it in hand we will be very near the end of the paperwork needed for our dossier. We anticipate that we are still on track to possibly travel to Eastern Europe for his adoption around April, maybe even sooner. We will be in country for a month and he will come home with us at the end of that time. Only one trip, but a long one.  

Thank you for your prayers and support!

Would you consider a donation to our sponsorship fund? We are currently at $6291, which is just incredible. We are only 8 weeks into our journey, and so close to $7000 which will mark 1/3 of the way to our goal! You can make a tax deductable donation here, or use the "donate" button on the right side of our blog.

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