We just got back from a second trip to Seattle Children's to have him seen by the other specialists he has been referred to. Lo and behold, although several thought Joshua had Sturge-Weber Syndrome, he does NOT at this point in time. Alleluia!! Yes he has many vascular malformations inside the skull, in the neck, and down one arm and hand, but there's no evidence any have penetrated into the brain, and that's very, VERY good news :-).
We have to wait until the full team meets in Seattle to help us come up with a plan for Joshua.
As we neared the end of our appointments in Seattle, Joshua started begging "I want to go HOME, Mommy, please Mommy?" :-). He was quite excited to see our home as we pulled into the driveway! And that's wonderful to see in him.... that he does feel like this is "home".
