Day +602: Early Merry Christmas

Christmas came a bit early to our house, and there is one happy little boy in our house! Wondeful Amber took pity on our little boy and gave him his guitar. She brought it by Saturday, and we opened it Tuesday morning. There was no question that it was going to be a big deal, so Keri and I were watching his reaction closely. He pulled it of the box, looked at it carefully, and then said very matter-of-factly "It's a guitar." He held in his hand a while and looked at it, and said again "It' s a guitar." He held it for a while again, looking at it all the time, and said "It's a guitar." Then he ran off into the kitchen by himself, and we heard him start strumming it and singing.

And he literally hasn't stopped since. He won't let it out of his hand. He carries it everywhere around the house. On Tuesday he pretty much sang and played his guitar the whole day. When I came home from a late night at the office, the guitar was next to him in the big bed. It fell out during the middle of the night, and I heard a big "Clang!" The last couple of days he'll put his guitar down next to him while he picks up a book or another toy. But very rarely will he walk away from it and leave it behind. Keri had a work day at Mina's school today, so Isaac got to go. He was planning to bring his guitar with him, but it got left behind in the rush down the stairs. Keri said he asked three times to go home because he missed his guitar. At the end of the day, Teacher Julie told Keri she would take care of the cleanup, because Keri better get Isaac home to his guitar.

He's obviously been studying his Music Together class teacher, because he has the motions down perfectly. He holds the guitar across his stomach like you're supposed to, strums chords with one hand and fingers the fret with the other. He doesn't know to press the strings, of course, so he plucks with his fingers instead. He switches it around and plays it left-handed or right-handed. It's kind of nice when he switches, because he mostly only gets the top strings when he strums, so when he switches it goes from a low tone to a high tone or vice versa. And he sings. He sings "Hello everybody, so glad to see you" from his music class, or "Goodbye, so long, farewell, my friend." Then he stops and says "It's time to clap now!" So we all clap and say "Yaay!" He has a few other Music Together songs in his repertoire as well. Sometimes he dances down the hall while he's playing and singing, doing his little dance where he goes up on tiptoes on one foot at a time. Then he'll stop and use the guitar as a drum for a while, then go back to the strumming.

Mina is having a bit of a hard time with it, because Isaac won't let her near it. She has said several times that she wants a guitar too, a pink guitar (Isaac's is a pretty, deep blue color). She did get a music maker for Christmas (a small stringed instrument a bit like a harpsichord, but you pluck the strings instead of hammering them), which actually makes much better sound, but I guess it's not quite the same. She's tried to pick up Isaac's guitar a few times, and he just has a fit, so we've had enforce that for him. I'm hoping someday he'll relent and let her have a turn, but he's showing no signs of it yet. Otherwise, we may get her one for her birthday if that's what she says she really wants. Mina loves music too, and has always loved to sing, but Isaac's just on a whole different planet.

We're headed up to the Northwest tomorrow. Keri and the kids are gone for three and a half weeks. I'll be heading back down for a week in between to get some work done. We'll be at Teri's until Monday, head over the pass to Wenatchee, and then to North Idaho to Kristy and Bill's. It will be so nice to see our families again. Merry Christmas to everyone! And thanks for caring about our family.

Day +595: Parent-Teacher Conference

Lots of news to report this time. Mina had a checkup with the bone marrow team on Wednesday. Dr. Horn was attending at clinic and we hadn't seen her since the picnic in June, so that was fun. She was the one who was attending while Mina was at her sickest, and we think she's terrific. Mina was tired and not at her best, unfortunately, but they said she looks great. The rashes she's been having do not look like chronic GVHD, which is a relief. They ordered an engraftment study, where they check to see if any of Mina's own blood cells have returned (which would be an early warning about relapse), so we'll be nervous until we get those results back. But things are looking great otherwise. And not only did Mina not cry during her blood draw, but she didn't even flinch when the needle went in! She's a tough cookie.

We went to see a performance by a dance class for preschoolers, just to see if it might be something that Mina and Isaac would be interested in. They had a great time, and Mina cried at the end because she didn't want it to be over. Mina happened to wear her "princess" outfit that day, which is basically a leotard, and she's wanted to wear it every day since. And she's been going around the house doing pirouhettes.

But the biggest event of all was the parent-teacher conference we had with Mina's preschool teacher on Tuesday. Mina still hasn't had her post-transplant neuro-psych evaluation, so this was really the first chance we had to get a professional opinion about where she's at developmentally. I tried to write down everything as soon as we got home, so I'll just let it flow like it did Tuesday night. Julie started off saying that Mina is a delight to have at school. She loves school more than any other kid, she's always smiling and is always busy. She loves doing artwork and is at the art table every day, but enjoys process more than outcome, so that she keeps going even after it seems like a piece would be finished. Julie says she'd keep painting until she wore a hole in the paper. She came into a situation where some of the kids had been together at the school last year, and within a very short while identified who the two main leaders were and established relationships with both of them without offending the other. One of them, Zane, was not giving Mina her due early on, so Mina smashed what he was working on. Julie said she was nervous about how it would play out, but after that everthing was fine. Zane is apparently a little intimidated by Mina, and he often says "That girl is strong!" Julie agrees that Mina is both strong and stron-willed, and one the few occasions when Mina doesn't want to do what the group is doing has had trouble getting her to go along and wondered how we do it at home (it's not easy). Mina was refusing to use the pottie during the time when the kids are supposed to, because she didn't have to go yet. The problem was that then she would pee in her pants during outside play because she didn't want to go back inside. Julie finally solved the problem by saying she would have to call us to pick her up and take her home the next time it happened. It hasn't happened since!

Julie says that the other kids like Mina because she is very inclusive in her play and easy to be around. She's usually willing during imaginative play to take the role the other kid doesn't want, or else to suggest creative solutions: "That's OK, we can have *two* mommies!" One time another girl, Riley, was feeling ill and was not treating Mina well. She kept saying things like "That's an ugly hat!" Mina would reply "But I like your hat!" And Riley would say "your hat is ugly!", and Mina would again reply "But I like your hat!" Finally Riley got tired of trying to goad Mina and said "Stop fighting with me!" Mina also corrects other kids when they aren't treating each other well, saying things like "That's not very kind."

Other interesting tidbits: Mina always remembers her place in line, and sometimes remembers other kids' places too and corrects them. And Julie says she is the only one who will leave her place in line, go play, and then come back when her turn is up. She keeps trying to get the other kids to come play too, but they all want to stay in line for whatever the activity is. I asked if the other kids are good about letting Mina back into her place in line, and Julie gave me a "don't be silly" look and said "No one messes with Mina."

Julie says Mina is just about on par for her age as far as verbal and math skills. Julie says her reaction to math is interesting: she recognizes and will count up to four objects, which is about normal, but then she clears the objects off the table and won't repeat the exercise. No idea why. Verbally, she's using all of the 12 markers Julie looks for in kids her age, e.g., uses past tense, says things like "usually I do X but today I want to do Y", etc.

Now, I'm sure Julie is emphasizing the positive and didn't want to spend a lot of time talking about negative things, but this was still all pretty overwhelming for us. We have had so many fears about what kind of condition Mina would be in after all of her treatments and whether she would be able to relate normally to other kids after being on isolation all that time. My fears have been that she would be the oddball, the one that other kids didn't like of made fun of. It's just such a relief to know that, at this point, she's interacting normally with other kids and in fact is a positive force at school. Julie says it's pretty amazing, and she really wonders how Mina would have been if she hadn't been on isolation. I'm just so thankful for Mina that she had Isaac, because she really always has interacted with him a lot and that has probably really helped. And then to know that developmentally she's right where she's supposed to be at despite everything... Keri and I both were feeling a little teary during and after the session.

I haven't confirmed this, but I think Julie must be teaching them letters at school because Mina now knows how to spell her name and we just taught her how to spell Isaac's. She says "I, S, double A, C". She's also learning to connect the sounds like "B" and "D" to new words that she hasn't memorized.

Finally, I got a kick out of this one. She's now asking why so many of the characters in her books are boys. And when we were reading Curious George Flies a Kite one time, she insisted that she wanted George to be a girl. So I said fine, we'll call him Curious Georgia. And now, whenever we read that book, I have to refer to him as Curious Georgia, and she corrects me right away if I slip up and say "he" or "him". She says it's OK for him to be Curious George when we read "Curious George Goes to the Hospital".

Day +585: The Velveteen Rabbit

Mina's school went to see a production of "The Velveteen Rabbit" last Friday. The Velveteen Rabbit is an old children's book that has been made into a dance performance, and has become kind of a San Francisco Christmas tradition. It's about a stuffed rabbit toy who becomes real. The school was able to get $10 tickets at kind of the last minute, and while some parents who aren't as spontaneous as Keri kind of grumbled, the kids all had a great time. Keri took Isaac and Mina, and she said both kids really loved it. Isaac was watching it very intently and commenting on it until he feel asleep after about half an hour. Keri said Mina paid attention the whole time. It was kind of a tearful event. Mina cried several times, the first time at intermission, when they stopped dancing. The second time Mina cried was when the rabbit came to life and was white instead of pink, like the stuffed rabbit was. And the third time she cried was when the rabbit hopped away, because she didn't want it to end.

Keri said she got a big sniffly as well, because the story involves a little boy who gets scarlet fever and is sick for a long time, and the Velveteen Rabbit is the one toy he loves so much who stays with him the entire time he is sick. After the boy gets well again, all the toys are piled up to be burned. That's when the Velveteen Rabbit turns into a real rabbit, to avoid the fire. In the meantime, the boy has gotten a new toy and has forgotten about the Velveteen Rabbit he had loved so much. Keri said it made her think a lot about Waah Baby. Mina, of course, hasn't forgotten about Waah Baby. She still says she has three babies, her two new ones and Waah Baby, except she doesn't know where Waah Baby is. But despite that, she's now taken to calling one of her new babies Waah Baby.

The kids went to a birthday party on Saturday for Leon, one of the kids in Mina's school. Leon has a guitar, and Keri said Isaac was hysterical. She said he looked at it for a long time before he finally asked if he could play with it, and when he got it, she said he was very gentle with it. And then he didn't put it down until it was time to leave, and then only under duress. Leon's mom told Keri she had to get Isaac a guitar the next day.