October 2-5: Mina at the clinic and Isaac at the pediatrician
I've completely lost track of the day numbers, and I'm not sure what they mean anymore, so I'm switching over to dates. Good news from today's clinic appointment: Mina Brigitta gained some weight back! She went from 13.4 kg (29.5 lbs.) two weeks ago to 13.7 kg (30.1 lbs.) today. We're also thinking she may have grown a little bit. Her height measurements don't seem very precise, but she's been measured at 91 cm (35.8 inches) the last few times after being measured at 89 cm in the past few months. Keri had Isaac at the pediatrician today and they looked at the growth charts for girls. Mina Brigitta is right at the 50th percentile in height and weight, after being 90th-95th up until this year. That's kind of tough news to hear in a way, just another reminder of how hard all of this has been on her body. Not that we hadn't already fully internalized that fact, but still...
Dr. Cowan had a look at her skin rash, and didn't seem too alarmed. It's really very subtle, so we're going to watch it carefully and see what happens. He felt comfortable dropping her cyclosporine down another notch, so she'll go from 25 mg to 20 mg three times a day. They took some blood to run a test of how well she is producing cortisone, which can be suppressed by steroids. If that result comes back normal, they may drop the prednisone altogether. She's also still on Cellsept, Acyclovir, Fluconazole, Pentamidine, and IV immunoglobulin, as well as an antacid, flouride and multi-vitamin. The last four are preventive drugs that she takes because of the immunosuppression caused by the cyclosporine, prednisone and Cellsept. She takes her meds like a champ, but we're looking forward to the day when we can leave them behind us. If all goes well, that could happen by the spring. In some cases, unfortunately, patients have to stay on them their entire lives.
They're planning to run a test of her T-cell functions after her next appointment, as well as another chimerism test. The chimerism test will tell us whether any of her own, likely cancerous bone marrow is growing back. I'm already anxious about it, even though we won't know the results for three weeks. T-cells are a type of lymphocyte, or white blood cell, that take a long time to recover full function after a bone marrow transplant, even without all of the medication. They're not expecting hers to be normal because of the medication, but the doctors want to see what they look like anyway. If they do come back with good numbers, they might lift some of her restrictions. The other news is that the orthopedic surgeon yesterday said she doesn't have to wear the boot anymore! Yay! She hadn't been wearing at home anyway, and her ankle was obviously feeling much better. They took an X-ray, but we never got a report so it must have been OK.
I don't know if I've mentioned this before, but I really feel like Mina Brigitta is growing and developing right before our eyes these days. Right about the time Grandma came, she stopped needing her Keri and me so much, and began to be much more independent. Keri says she's now morphing from a toddler into a little girl. I think Lyn's presence helped trigger that, because Mina feels so comfortable with her, it allows her to explore the world without the smothering presence of her parents. Today she opened her mouth for Dr. Cowan to look in for first time. All that time in the hospital, and with how good she was about everything else, opening her mouth was the one thing she consistenly refused to do. She even gave Dr. Cowan a hug today, and when I asked her if she'd seen Dr. Horn, she said "No, Doctoe Cow-een."
Lars Isaac, on the other hand, is having a bit of a rough go of it these days. He's at the age of separation anxiety, and he screams and arches his back whenever Keri tries to pass him off to someone else. We think he may also be betting a molar or two. Then today he had to get his chicken pox and MMR vaccinations. He is still at 90th percentile on height and 50th on weight, even though I thought maybe he'd gained some bulk as well. I didn't have the energy to post much on his birthday, but I'm so thankful we have him. He was conceived about a week before Mina Brigitta was diagnosed, so he's really been with us from the beginning. There were times when we weren't sure how we could possibly welcome another baby into our family at this time, but he's such a joy to have around, now I can't imagine life without him. He's been a ray of sunshine throughout this ordeal. I'm sure he's been affected by it in lots of subtle ways, but he and Mina love each other so much it's all worth it. Mina sometimes just wants to hold him, so she'll grab onto him and won't let go. He screams bloody murder, and we have to explain to her that we know she's just showing affection, but Bubba doesn't like to be held like that. I'm looking forward to watching their relationship grow and develop over the years.
Dr. Cowan had a look at her skin rash, and didn't seem too alarmed. It's really very subtle, so we're going to watch it carefully and see what happens. He felt comfortable dropping her cyclosporine down another notch, so she'll go from 25 mg to 20 mg three times a day. They took some blood to run a test of how well she is producing cortisone, which can be suppressed by steroids. If that result comes back normal, they may drop the prednisone altogether. She's also still on Cellsept, Acyclovir, Fluconazole, Pentamidine, and IV immunoglobulin, as well as an antacid, flouride and multi-vitamin. The last four are preventive drugs that she takes because of the immunosuppression caused by the cyclosporine, prednisone and Cellsept. She takes her meds like a champ, but we're looking forward to the day when we can leave them behind us. If all goes well, that could happen by the spring. In some cases, unfortunately, patients have to stay on them their entire lives.
They're planning to run a test of her T-cell functions after her next appointment, as well as another chimerism test. The chimerism test will tell us whether any of her own, likely cancerous bone marrow is growing back. I'm already anxious about it, even though we won't know the results for three weeks. T-cells are a type of lymphocyte, or white blood cell, that take a long time to recover full function after a bone marrow transplant, even without all of the medication. They're not expecting hers to be normal because of the medication, but the doctors want to see what they look like anyway. If they do come back with good numbers, they might lift some of her restrictions. The other news is that the orthopedic surgeon yesterday said she doesn't have to wear the boot anymore! Yay! She hadn't been wearing at home anyway, and her ankle was obviously feeling much better. They took an X-ray, but we never got a report so it must have been OK.
I don't know if I've mentioned this before, but I really feel like Mina Brigitta is growing and developing right before our eyes these days. Right about the time Grandma came, she stopped needing her Keri and me so much, and began to be much more independent. Keri says she's now morphing from a toddler into a little girl. I think Lyn's presence helped trigger that, because Mina feels so comfortable with her, it allows her to explore the world without the smothering presence of her parents. Today she opened her mouth for Dr. Cowan to look in for first time. All that time in the hospital, and with how good she was about everything else, opening her mouth was the one thing she consistenly refused to do. She even gave Dr. Cowan a hug today, and when I asked her if she'd seen Dr. Horn, she said "No, Doctoe Cow-een."
Lars Isaac, on the other hand, is having a bit of a rough go of it these days. He's at the age of separation anxiety, and he screams and arches his back whenever Keri tries to pass him off to someone else. We think he may also be betting a molar or two. Then today he had to get his chicken pox and MMR vaccinations. He is still at 90th percentile on height and 50th on weight, even though I thought maybe he'd gained some bulk as well. I didn't have the energy to post much on his birthday, but I'm so thankful we have him. He was conceived about a week before Mina Brigitta was diagnosed, so he's really been with us from the beginning. There were times when we weren't sure how we could possibly welcome another baby into our family at this time, but he's such a joy to have around, now I can't imagine life without him. He's been a ray of sunshine throughout this ordeal. I'm sure he's been affected by it in lots of subtle ways, but he and Mina love each other so much it's all worth it. Mina sometimes just wants to hold him, so she'll grab onto him and won't let go. He screams bloody murder, and we have to explain to her that we know she's just showing affection, but Bubba doesn't like to be held like that. I'm looking forward to watching their relationship grow and develop over the years.
posted by Arne Olson @ 11:05 PM
1 Comments:
At 10:02 AM PDT,
Anonymous said…
It's great to hear the kids are doing so well, even if it means they are moving towards independence. It means you are that much closer to someday having some time (like a weekend?) for just you and Keri!
Take care,
Stacey in Oly
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