The Good News: we have been formally accepted by our chosen adoption agency. We received conditional approval earlier this week but needed to get a letter from the agency we had previously signed up with for Russia. This all happened today.
The Other News: our 6 year old was diagnosed a few months ago with something called Hypermobile Ehlers-Danlos Syndrome (HEDS) at the Connective Tissue Clinic at Children's Hospital of Philadelphia (CHOP). This is an inherited soft tissue disorder which, in our son's case, causes joint instability, fatigue and pain. We returned to CHOP yesterday for a full evaluation with physical and occupational therapy, and it turns out he's got some skin issues also, namely his skin is very stretchy and doesn't heal well. He also needs to wear custom braces (instead of the inserts he's wearing currently) that will come up over his ankles. Actually, I think he's going to love them - he cinches his shoes so tightly that he wrecks them all and these orthotics are designed to fit very tightly. They also come in cool colors and designs.
The biggest problem, for him, is that there are certain activities that are restricted - his favorite being gymnastics which, being so flexible, he's extremely good at. But we need to protect his joints and take care not to stretch out his ligaments any more than they already are. He was upset during the appointment, largely because he felt a little scared, then cried at home because, in his own words, "I wish I didn't have these problems."
Reaching this diagnosis has been a long journey for our family, where we've picked up various other diagnosis (some accurate, others not) along the way. The good news, I think, is that the various symptoms and behaviors we've experienced over Thomas' 6 years are all interwoven with EDS. Having this diagnosis gives us knowledge and knowledge is power. Plus, we now have a professional support system at CHOP (1 hour from home) that we can call upon at any time.
Back to the school district we go, probably for a 504 plan...
2 weeks ago