So the holiday season came and went and we are fast approaching two years since Luke's first diagnosis. One day at a time really does add up. Luke had a good Christmas, being pampered by his grandparents Baba and Mimi, over from France for three weeks. We enjoyed being pampered by them too. But it's good to get back into something of a routine in the New Year. And the New Year has brought new stuff: new nurses, because our insurance decided to change agencies; two new kittens (actually they turned up at Thanksgiving) who spend a lot of time lying next to Luke purring away; a new school bus that now picks up Luke and his nurse from the end of our drive at 7.15am on school days (see pic); and finally some new challenges for Luke. Lately he has been vomiting quite a bit. It's hard to tell whether this is the result of a bug, or just that it's a challenge to keep things all going in the same direction due to his muscles acting up (seems to be mostly the latter). When this happens we have to back off on his food intake a bit, and if it carries on we may have to resort to Pedialyte only for a while to give him a chance to recover (like last week). This also makes it difficult to keep his weight up. He put on a couple of pounds over Christmas, which was really pleasing (I know what you're thinking, right?). After last week's excitement this has mostly dropped off again, but not completely, so maybe it's two steps forward one step back. Also his hips are giving him trouble because they are in the process of dislocating. We had him up at the Shriners Hospital again last week for repeat x-rays and it looks like things have got a lot worse since last time (a couple of months ago). His left hip in particular is painful so it’s hard to put him in the stander. He will go in it, but only on his right leg, with his left leg sticking out, bent across his right leg, so he can't stay in it for long. The Orthopaedic Dr at Shriners says there are some surgeries that might help, but we are very reluctant to put him through that. We are planning to discuss all this with Dr Escolar on our next visit to Pittsburg. That's scheduled for early April but we are trying to bring it forward given there is quite a bit going on at the moment (Pittsburgh in February again; lovely).
As always, thanks for checking up on Luke. We'll post another progress report soon.
As always, thanks for checking up on Luke. We'll post another progress report soon.