Things have been busy! But good. A far cry from last year, that's for sure. Last year I spent my birthday in the hospital in Dallas talking to a bunch of doctors who didn't know...much..., while my parents drove my precious little one year old over for visits.
This time last year we were still in Dallas, living at my parents, with James hooked up to a PICC line and Eve sleeping in the closet. Have I mentioned how awesome my parents are?
Anyway, that whole experience was sort of a waste in the sense that we were hoping that even with all the awfulness, surely someone was going to figure out what was wrong, finally. But that didn't happen so really it just sucked. I think 6 months later we were back where we started.
That, though, sent us on the path to New York, and THAT is what led us to this amazing summer we are having!
James looks so great and is still slowly gaining weight. Mostly, he feels good and acts bad!! ;).
Eve is the same.
It's helped that we are having the best weather in the history of VA summers, so we've spent a lot of time at the barn with BOTH kids riding. James never wanted to ride much before because he felt miserable all the time and then would get too hot or cold. Not only is the weather perfect, but he seems to be able to regulate his temperature better. I'm assuming just from his neurological health improving. He can go swimming without turning blue in 5 seconds. Things are kind of....still moving towards normal....
Well, we're easy to please. Things are far from normal, but we are basically functional now! So that's a plus. Just hoping we can keep this trajectory and maybe next summer we can do something crazy normal...like go on a vacation....
(We are holding her leg)