Day +229: No more midnight meds!

Mina and Momma spent basically the entire day at the clinic today. Mina saw Dr. Horn, then got her IVIG, which has to infuse over a few hours, and her pentamidine. Then she had to go for X-rays of her chest and sinuses, just to make sure everything looks OK, because she still has some mild symptoms. No report yet on the X-rays, but her symptoms are really quite mild, so we're not expecting much. She has had some gastro-intestinal symptoms again this week, so they're advising us to lay off the dairy and see if that helps. We'd been encouraging her to drink more milk lately, so maybe that will take care of it.

But the really great news is that they've decided to discontinue her cyclosporin, which is the anti-rejection drug she's been on since the transplant. Anti-rejection drugs work by inhibiting immune system function, so we'll be very glad when she's off them all. The last immune modulator that she's on is Cellcept, and there's been no talk yet of taking her off that yet. One step at a time. But I was a bit surprised they even took this step, given the rash she's had on her face. I guess they're satisfied that it responded to the hydrocortisone cream. Cyclosporine is the drug that has to be given three times a day, as close to 8 hours apart as possible. We've been giving it to her at 8 AM, 4 PM, and midnight, which has been hard on my sleep patterns. So from now on I'll be able to go to bed whenever I want like a normal person. Woohoo! What a nice birthday present for Dadda.

We had planned to take Lyn and the kids to our local Japanese restaurant to celebrate my 40th birthday, but they got home too late from the hospital and the kids weren't in the right frame of mind. Isaac's little nose is like a faucet right now, though it's running clear and he doesn't seem too sick otherwise. We did go to a Christmas sing-along at the neighborhood grade school, which is a block from our house. It was very fun -- there must have been 100 people crowded into the lunch room. Mina kept saying "Sing another one?" whenever they would stop, and I don't think Isaac ever took his eyes off the woman who was playing guitar.

I missed decorating the Christmas tree on Monday, but Lyn said each new ornament elicited a squeal from Mina Brigitta when it came out of the box. Tuesday morning they were up at 6:00 AM, and they had forgotten about the tree. We kept the door to the living/dining room area closed so as not to disturb Lyn, who was sleeping on our couch. The kids had been up for over an hour before Lyn came into the kitchen and asked Mina if she wanted to show Dadda the tree. She shrieked and went running into the dining room yelling "Yook Dadda, yook at dis!" Isaac came in too with a big grin on his face. He kept looking at me, then looking at the tree and saying "Dis! Dis!" It really is a lovely tree, and with all the boxes that have been arriving, it'll soon be littered with presents.