Thursday, August 11, 2016

Unraveling the Mystery

Joey is a huge mystery to us in pretty much every way. Physically, personally, academically, socially...We have some limited information about him, but it's really a skeleton of all there is to know about him. When he comes home, our main priority is to bond with him and him with us, to attach deeply and well. That will take years, but the first few weeks and months will especially be focused on those things.  We can't wait to be his family, to love on him and care for him and start that bond. 

We're also excited to start figuring out the mystery of his physical condition. Arthrogryposis (AMC) is rare and affects every person differently, We really don't know a lot about what he can do physically and how we can help him.   The need for that will be somewhat urgent, as he sometimes requires a wheelchair and well, that's a whole new ball game for us. We're not sure how to care for him on a daily basis, how he gets around, how he rides in the car, how he gets ready for the day... We'll be in survival mode in China, but will ready for outside help fairly soon after we get home.  It's such a double-edged sword because while we don't want to overwhelm him, we're craving input and outside help.  

We still aren't sure what all doctors and specialists we'll need, but we've been given some places to start. Of course, this plan could completely go astray once we meet him, but this is the plan for now!

  • Pediatrician-get a baseline of his health and treat any possible infections, scabies, etc. if need be
  • International Adoption Clinic- overall health assessment, bloodwork, OT eval & social worker visit
  • Ortho-hand doctor
  • Ortho-foot doctor (because apparently they are different doctors who do not work on the same day)
  • Rehab clinic- not sure what this will entail, but was told they'll help us with daily functioning type things
  • Genetics
  • Wheelchair Fitting

We're also on a waiting list for an amazing AMC doc in Philly, but we were told it'll probably be a year before we can be seen by that particular doctor.

Hopefully these visits will give us a much bigger picture into his condition and what his care will look like. He's gone 8 years maintaining "status quo" and the kid is overdue to have the proper treatments so he is more comfortable and can function more easily and independently.  I'm sure it'll be a lot for him, and us, but taking him to these appointments will also reinforce to him that we're his parents and we're going to take care of him, which is a really good thing.

We leave 3 weeks from today!!!


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