in-between

It has been a busy day here. I always marvel at that...how a day in the hospital can fill so quickly. So many doctors, nurses, specialists, and others (a social worker, a post-hospital case manager, the cleaning staff, the laundry staff...) in and out throughout the day. I was able to catch a one-hour nap around lunchtime, which was much-needed. And I had a wonderful visitor this morning...Dr. Trenor, Orilus' transplant doctor, who came and literally hung out with me for an hour, chatting and keeping me company. He can't believe we're here again, but his usual calm and cheery demeanor did much to remind me that we came through Orilus' bone marrow transplant, and will come through this, too.

This afternoon Moriah's 28-or-so head wires were removed. No more hat! This was surprising news to me...yesterday, I had been told they would remain for some time. But it's so nice to see Moriah and her hair (which didn't come off). I gave Moriah a bath in one of those pink hospital basins (hilarious, since she doesn't fit really) and am realizing that it will take a few baths before the glue comes off. But Moriah is now wire-, lead-, and IV-free!

The next 18 hours or so are in-between. The seizure monitoring is behind us (I can dash guilt-free to the kitchen down the hall for a cup of coffee), the start of Moriah's hormone therapy (called ACTH) is ahead of us. This evening I've got to start injecting oranges and learning how to use urine and poop test sticks, as we'll need to give the injections at home and test Moriah's poop for blood and her urine for sugars. The nurse told me to expect that Moriah will become more irritable once we begin the ACTH--harder to settle, less able to sleep. So this quiet hour, with Moriah fast asleep after her bathtime, seems like the calm before the storm.

I really do want to say thanks to so many for reading our blog, checking our Facebook status, writing posts, and sending emails. It's very difficult for me to leave the floor (as Moriah should not be left unattended as a baby alone in her room), and I expect to be "stuck" here for the next few days; your writings help me to feel I'm not forgotten, and to remember that Moriah is surrounded with prayer and love. We are praying that Moriah will respond well to the ACTH, and that the therapy will resolve her seizure disorder completely and forever, without ill effect. Thank you for praying and hoping with us.