Day +317: Blood flow not recovering

Mina Brigitta had her clinic appointment yesterday while I was away on a business trip. Keri said she was a very big girl. She's getting to be so mature that the Benedryl she got before the infusion of IVIG didn't put her to sleep like it usually does. So she spent the whole say at the clinic until 4 PM without napping. Isaac went to Kaaren's house where he usually goes on clinic days. Kaaren is a terrific caregiver who was introduced to us by our wonderful pediatrician. She absolutely adores Isaac, and the feeling appears to be mutual. Kaaren also watches her granddaughter Mikaela, who is two and a half and who gets along really well with both Isaac and Mina. Isaac had such a good time yesterday that he didn't nap either, which is unheard of for him. So they both fell asleep in the car at about 4:30 and slept right through until morning.

The good news from Mina's appointment is that her counts looked normal. She's totally off of immunosuppressents now and has been for a week, and that appears to be going fine. We gave her the last dose of acyclovir and fluconozole this morning. Now the monthly infusions of IVIG is all that she'll get. We can probably look forward to her getting sick on occasion, since she won't have the antiviral in her system any longer, but that's a small price to pay to be free from meds altogether. Dr. Loh also said we should go back to Dr. Aicardi, our pediatrician, for some of her appointments, but she'll be able to recognize better whether Mina Brigitta is having any developmental issues.

The bad news from the appointment today is that the blood is not improving in the sub-clavian vein; in fact, it's closer to 100% occluded now instead of 90%. There is evidence of new veins growing, and Dr. Loh said she can function fine if the vein never returns to normal. But they would have expected any irritation from the catheter to have resolved by now, so they're a bit more worried about the possibility of a clot. So we're giving her children's aspirin every day now, and they've scheduled an MRI for Tuesday. This is definitely worrisome, so we'll just hope that Tuesday shows no clot.

Isaac had to go to the clinic last week too, and Keri said Mina Brigitta was very interested to see the tables turned. He had to get some immunizations, and Mina sang Twinkle Twinkle Little Star to him and said "You're OK!" when he was crying. Then she was telling him he would get a "Pooh", which is her word for a bandaid. Isaac cried of course, but can't have been too traumatized by it because in the car on the way home he pointed to his arm and said "More!" He had his first haircut last week too! It was getting in his eyes and was pretty long in back, so it was time. Keri took him to her sylist, who was very patient and did a very nice job. Keri was traumatized at first thinking she had cut off all of Isaac's curls, but they came back with the first washing. He looks much more like a little boy now with short bangs. In fact, he's pretty much turning into a boy before our eyes. He's talking and singing up a storm now, and he's very articulate. He can repeat almost any word you say to him, and he's really enjoying the discovery that you can use words to communicate. And he and Mina are so cute together. Now the first thing he says when he wakes up in the morning is "Sissy?" And the first thing she wants to do is go and see Bubba.