Day +922: Great news and not so great news
Long time since the last post, mostly because of my crazy work schedule. My firm has a big project to help the state of California figure out how much it's going to cost to reduce its electricity sector greenhouse gas emissions to 1990 levels by 2020. Fun stuff, but we've been sprinting for about two months now and I'm seriously short on sleep and sanity.
But enough about me, on to the fun stuff: the kids! I'll start with the not-so-great news, so no one worries too much: Mina has "very slight" cataracts. This is a fairly common side effect of the radiation, and we certainly knew this was a possibility. The opthamologist said that there are a lot of things they can do now short of cornea transplants, but it's important to catch the problem early. He doesn't know if they are going to progress or just kind of hold steady, so he's just going watch things for now. He wants to see her again in four months. Not the news we wanted to hear, but we can live with this given some of the alternatives. He also said that Mina is slightly far-sighted, so he prescribed glasses for her. He was kind of on the fence about it, and he said she didn't need to wear them all the time, so we haven't been in any hurry to go out and buy them and make Mina start wearing them. We may just see what he says when she goes back.
Now, on to the great news: Mina did really well on her neuro-psych testing! Doctor Ambler started off by saying how much fun Mina was, and how she had charmed everybody on the floor. Then she told us her favorite Mina stories. One time Keri had given her a sugar cookie to eat during the testing, and it was sort of crumbling all over the table. Mina noticed it, and said to the doctor: "That's OK, you can just clean it up after I leave!" Her other story was that one time she was asking Mina if her teacher had taught her some specific thing (forget what exactly). Mina said "No. Actually, my teacher doesn't teach me very much." Doctor Ambler asked if Mina would like it if her teacher taught her more stuff. Mina thought about it a minute, and then said "Naah." Dr. Ambler was quite genuine in her enthusiasm for how much she had enjoyed Mina, so that part was very touching.
Then she went on to discuss the results. She basically put Mina through about 4 hours of standardized tests, similar to the kind that could be used to calculate an IQ. She didn't give us a total IQ number, but some of the scores were based on 100 as an average, like the scale for the IQ tests. Mina performed average to above average in nearly every area, and was well above average on the verbal portions of the test, between 119 and 137 on the IQ scale. I'm forgetting the details now, and we don't yet have the written report, but I believe the areas where she scored slightly below average were in things like pattern recognition and tests involving speed. Dr. Ambler thought that some of it might just be immaturity, i.e., Mina not really knowing that she was supposed to be focusing on scoring well. She was also very interested in the fact that Mina is far-sighted. One of the things she was struck by is how self-confident Mina is. She said Mina just charged right into the tests, and sometimes didn't take all the time she might have needed to do a careful job. But overall, Dr. Ambler was really thrilled with the results, given all that Mina has been through.
She also spent some time talking to us about what we might see in the future. There's no way to knowing how things will play out with Mina, of course, but she said the kids sometimes have problems in a few areas: math and spatial reasoning, doing things quickly, and doing things that require the integration of many different skills. The radiation basically kills off cells in the white matter, so that as the brain is trying to make a neural pathway to make a connection it might sometimes encounter dead zones and have to find another route. That's why it takes longer. If I'm remembering right, there is also more white matter in the right side of the brain, which might explain why these patients have trouble with math and spatial reasoning and integrating the specific skills into a useful whole. It's far too early to tell if Mina will have any trouble at all in these areas, of course, but it's useful to have a sense of what to watch out for and what to tell Mina's teachers. We also had a brief discussion about schools, and Dr. Ambler expressed her willingness to talk to Teacher Julie and perhaps even write a letter to the teachers and officials at Mina's grade school next year. It will be nice to Dr. Ambler in our corner. She was very pleased to be able to give Mina such a glowing report, and she wants to see her again in three years to check progress.
One thing Dr. Ambler noticed is that Mina was always dressed in some outfit that was very cute but also obviously of Mina's own choosing. Mina picks out her own clothes every day now, and has become very good at mixing and matching her dresses, shirts and leggings. She also is really observant about what other people are wearing. She made several comments to Dr. Ambler and her colleagues about how they were dressed. One day recently I wore a belt that I hadn't worn in a long time, and Mina noticed and commented right away.
Grandma and Grandpa came down for a week in October. We always have a nice time when they are here. The kids are excited to go in and wake them up every morning, and to have some playmates around the house. They fit in very easily and the kids are very comfortable with them, so it doesn't feel like a huge transition when they come and when they leave, which makes it really nice for us. We went on a couple of hikes, one to Mt. Tamalpais and one down to the beach in Point Reyes. Both hikes were over four miles, and the kids did great. I carried Isaac a bit on both days, but was able to talk him out of it by playing the "Zuckerman's Famous Pig" game (from Charlotte's Web), where we march around with Isaac in the front raising his arm up and down like the drum major, and me in back playing the air trombone. We must have marched like that for half a mile on Saturday. The other game they played on the hikes, and have been playing a lot again lately, is Mommie and Baby. Mina is the mommie, and Isaac is the baby. She's kind of a momma, and he's kind of a momma's boy, so they get along great. She calls him "Baby" and "Sweetie".
We also had Halloween. Ours was fairly mellow. Instead of going up to the neighborhood bash, which can be kind of crazy for the little kids, we went to a "fairy walk" at the San Francisco Waldorf School. They had people staged all throughout the school, dressed in elaborate costumes and acting out the Brothers Grimm fairy tales. It was very nice and relaxing, and it was great to see that people can get together and do something really creative and amazing. The whole thing was done by volunteers. Then we went trick-or-treating in the neighborhood around the school, rather than our neighborhood. We went to ten houses or so. Isaac wore his bat costume and Mina, of course, was a princess. I'm hopeful things will mellow out at work when our deadlines are over in a week or so, and I'll finally have time to finish the photo album I've been working on.
But enough about me, on to the fun stuff: the kids! I'll start with the not-so-great news, so no one worries too much: Mina has "very slight" cataracts. This is a fairly common side effect of the radiation, and we certainly knew this was a possibility. The opthamologist said that there are a lot of things they can do now short of cornea transplants, but it's important to catch the problem early. He doesn't know if they are going to progress or just kind of hold steady, so he's just going watch things for now. He wants to see her again in four months. Not the news we wanted to hear, but we can live with this given some of the alternatives. He also said that Mina is slightly far-sighted, so he prescribed glasses for her. He was kind of on the fence about it, and he said she didn't need to wear them all the time, so we haven't been in any hurry to go out and buy them and make Mina start wearing them. We may just see what he says when she goes back.
Now, on to the great news: Mina did really well on her neuro-psych testing! Doctor Ambler started off by saying how much fun Mina was, and how she had charmed everybody on the floor. Then she told us her favorite Mina stories. One time Keri had given her a sugar cookie to eat during the testing, and it was sort of crumbling all over the table. Mina noticed it, and said to the doctor: "That's OK, you can just clean it up after I leave!" Her other story was that one time she was asking Mina if her teacher had taught her some specific thing (forget what exactly). Mina said "No. Actually, my teacher doesn't teach me very much." Doctor Ambler asked if Mina would like it if her teacher taught her more stuff. Mina thought about it a minute, and then said "Naah." Dr. Ambler was quite genuine in her enthusiasm for how much she had enjoyed Mina, so that part was very touching.
Then she went on to discuss the results. She basically put Mina through about 4 hours of standardized tests, similar to the kind that could be used to calculate an IQ. She didn't give us a total IQ number, but some of the scores were based on 100 as an average, like the scale for the IQ tests. Mina performed average to above average in nearly every area, and was well above average on the verbal portions of the test, between 119 and 137 on the IQ scale. I'm forgetting the details now, and we don't yet have the written report, but I believe the areas where she scored slightly below average were in things like pattern recognition and tests involving speed. Dr. Ambler thought that some of it might just be immaturity, i.e., Mina not really knowing that she was supposed to be focusing on scoring well. She was also very interested in the fact that Mina is far-sighted. One of the things she was struck by is how self-confident Mina is. She said Mina just charged right into the tests, and sometimes didn't take all the time she might have needed to do a careful job. But overall, Dr. Ambler was really thrilled with the results, given all that Mina has been through.
She also spent some time talking to us about what we might see in the future. There's no way to knowing how things will play out with Mina, of course, but she said the kids sometimes have problems in a few areas: math and spatial reasoning, doing things quickly, and doing things that require the integration of many different skills. The radiation basically kills off cells in the white matter, so that as the brain is trying to make a neural pathway to make a connection it might sometimes encounter dead zones and have to find another route. That's why it takes longer. If I'm remembering right, there is also more white matter in the right side of the brain, which might explain why these patients have trouble with math and spatial reasoning and integrating the specific skills into a useful whole. It's far too early to tell if Mina will have any trouble at all in these areas, of course, but it's useful to have a sense of what to watch out for and what to tell Mina's teachers. We also had a brief discussion about schools, and Dr. Ambler expressed her willingness to talk to Teacher Julie and perhaps even write a letter to the teachers and officials at Mina's grade school next year. It will be nice to Dr. Ambler in our corner. She was very pleased to be able to give Mina such a glowing report, and she wants to see her again in three years to check progress.
One thing Dr. Ambler noticed is that Mina was always dressed in some outfit that was very cute but also obviously of Mina's own choosing. Mina picks out her own clothes every day now, and has become very good at mixing and matching her dresses, shirts and leggings. She also is really observant about what other people are wearing. She made several comments to Dr. Ambler and her colleagues about how they were dressed. One day recently I wore a belt that I hadn't worn in a long time, and Mina noticed and commented right away.
Grandma and Grandpa came down for a week in October. We always have a nice time when they are here. The kids are excited to go in and wake them up every morning, and to have some playmates around the house. They fit in very easily and the kids are very comfortable with them, so it doesn't feel like a huge transition when they come and when they leave, which makes it really nice for us. We went on a couple of hikes, one to Mt. Tamalpais and one down to the beach in Point Reyes. Both hikes were over four miles, and the kids did great. I carried Isaac a bit on both days, but was able to talk him out of it by playing the "Zuckerman's Famous Pig" game (from Charlotte's Web), where we march around with Isaac in the front raising his arm up and down like the drum major, and me in back playing the air trombone. We must have marched like that for half a mile on Saturday. The other game they played on the hikes, and have been playing a lot again lately, is Mommie and Baby. Mina is the mommie, and Isaac is the baby. She's kind of a momma, and he's kind of a momma's boy, so they get along great. She calls him "Baby" and "Sweetie".
We also had Halloween. Ours was fairly mellow. Instead of going up to the neighborhood bash, which can be kind of crazy for the little kids, we went to a "fairy walk" at the San Francisco Waldorf School. They had people staged all throughout the school, dressed in elaborate costumes and acting out the Brothers Grimm fairy tales. It was very nice and relaxing, and it was great to see that people can get together and do something really creative and amazing. The whole thing was done by volunteers. Then we went trick-or-treating in the neighborhood around the school, rather than our neighborhood. We went to ten houses or so. Isaac wore his bat costume and Mina, of course, was a princess. I'm hopeful things will mellow out at work when our deadlines are over in a week or so, and I'll finally have time to finish the photo album I've been working on.
posted by Arne Olson @ 9:49 PM
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