Tuesday, February 2, 2016

Our Special Guy

While we are still 8-10 months away from bringing Joey home, he's on our mind constantly.  Right now I'm working on his second care package we hope to send him soon. It's so different preparing care packages for a 7 year old kid versus a baby.  What does he like? What does he need? What is he able to do with his hands/body given his physical limitations? Will they even give him the package and let him keep the things we put so much thought into? What about all the other kids there who aren't getting care packages, how will that make them feel?

We're just doing the best we can and hope he gets it and hope he feels the love from us.  I'm making him a little photo book with pictures of us and our family. It's so strange to choose pictures that will be his first glimpse of us!  What will he think of us?  I pray that his little heart will be filled with hope and the knowledge that we're working hard to get him home.

We've had amazing response and support from our friends and family since our announcement! Lots of you have asked specifics about his special need, so here's what we know.

His paperwork says he has "multiple joint contracture", which likely means he has Arthrogryposis Multiplex Congenita, or AMC.  We're still learning, but from what we understand so far, Arthrogryposis is non progressive, and affects his joints. Every person with Arthgryposis is affected differently, to varying degrees.  His affects the joints in his upper and lower limbs. What that means is his elbows, wrists, knees and ankles do not bend correctly. We're not sure about his shoulders and hips, and club feet is also included in his diagnosis.

At first glance, it's a lot. His body is different and always will be. While it's not progressive, it's also not completely correctable either.  What we can tell already, though, is that this kid is full of spunk and determination and is already a pro at modifying things so that he can function.  Some people with AMC are completely dependent on wheelchairs, but Joey can walk! It's not a "typical" walk but it's truly amazing that he walks! He can't walk for long periods of time or long distances, though, so he does sometimes use a wheelchair.  We had a leading doctor for AMC review his file for us and he said it's really crazy good that he is walking and is a testament to his determination. In fact, what we've heard from other parents of kiddos with AMC is that in general they tend to be very determined, high spirited and happy kids.  I'm thinking maybe he's gonna teach us a thing or two. :)

From the videos and pictures we have of him, he is able to hold a pencil to write, can sit in a chair and play and enjoy typical kid activities despite having to modify things a bit to make it happen.  While he has had at least one surgery and possibly some therapies in China, there are so many more things we can do to help him once he's home.  We don't know exactly what his treatment plan will entail, but it most likely will be a combination of surgeries, castings and occupational and physical therapy. We feel blessed and honored that we get to be the ones to be his advocate and get him the care that he absolutely deserves.

Some other things we know about him:  He lives with foster parents at the orphanage.  We're grateful that it appears that he is getting some schooling at his orphanage. A US program called Half the Sky Foundation helps to support his orphanage and we believe that he is benefiting from the schooling and care that that program provides. 

An update on him from last July said the following about him:  "His spirit is good. He is intelligent and lively. He likes to spread happiness to the children around him. When other children need help, he will enthusiastically go to help them. Zhao Yu is good at using language to express his ideas and thoughts."  That just fills my momma heart!

Other fun facts: 
  • His birthday is July 24, 2008, which means he's only about 4 months younger than Sam.  This is considered "artificial or virtual twinning".  Purposely having two kids that close in age is not generally looked upon positively in the adoption world, but we're pretty excited about it and how close the boys will all be!
  • He lives in the Xinjiang Province, which is in northwest China. https://en.wikipedia.org/wiki/Xinjiang
  •  His orphanage is in the city of Urumqi. https://en.wikipedia.org/wiki/%C3%9Cr%C3%BCmqi
  • A friend in the adoption world met him when she was volunteering in China and wrote this wonderful blog post about him. It has more adorable videos and information!  http://waitingchildinfo.com/2008/07/01/shawn/

Joey has AMC, but it does NOT define who he is.   When we see Joey's face, we don't see a diagnosis. He is a human being (an absolutely adorable one at that!) and we know we're going to be blessed immeasurably by him.  We cannot wait to get him home!!

1 comment:

  1. Oh, his smile! What a sweetheart! So excited to follow along and hopefully we won't be too far behind you guys! Our little guy is also very close in age to our two boys (just a couple of months younger than our eldest). Thank you for sharing more about Joey!