Day +226: Beginning to feel a lot like...
Not because of the weather, which has been beautiful. But Keri has decided she loves Christmas music, and my parents have been kind enough to keep us supplied with CDs of choral music. Keri's been playing them nonstop since Thanksgiving, and the other day she told me that the only bad thing about Christmas music was that you only get to listen to it during the Christmas season.
We also got our tree today. Mina and I towed the Radio Flyer wagon the three blocks down to Cole Hardware, where we were lucky enough to pay $55 for a seven-foot noble fir. After almost not getting a tree last year, I asked Keri this year if she just wanted a small tree, and she said "No way!" We definitely have the Christmas bug in this house. Mina was a bit concerned when we laid it the tree in the wagon. She asked several times if it was going to stand up, and then again at home when we laid it in the foyer while we ate dinner. She shrieked in joy when we arrived home with the tree, and it was all we could do to get her to sit down for dinner. Which was important because Grandma Lyn is in town, and she and Keri spent all day in the kitchen making a big turkey dinner, complete with stuffing, mashed potatoes, sweet potatoes, homemade rolls, and wassail. The house still smells wonderful. We finally got the tree upright at about 8:00, and Mina didn't settle down for bed until well after 9:00.
Still some ups and downs healthwise. Mina finally got rid of her intestinal symptoms early last week. On Tuesday she had about three bowls of oatmeal for breakfast and a hamburger for lunch, and she hasn't looked back since. Her stools have returned to normal as well, which is really a big relief. Isaac, on the other hand, has been having some trouble again, and now all of a sudden they both have snotty noses, so they might be getting another cold.
More troubling, she's had a dry, itchy rash forming around both of her ears, and some small bumps on her face. It started about mid-week, and by Saturday morning it had progressed enough that I wanted to have her looked at. So I bundled Isaac and her into the double stroller and hiked up the hill to the hospital. We went back to Seven Long, since the clinic was closed on Saturday. When Mina saw that we were turning left toward the hospital instead of right toward the clinic, she clapped her hands. When I asked her why she was clapping her hands, she said "because we're going to the hospital!" It's kind of fun to go in there, because each time we do we see a nurse who hasn't seen her since June. They all make a big fuss about her, especially her hair. She even remarked to Mama later on how much the nurses liked her hair. Isaac gets a lot of attention too -- many of them actually saw more of him when we were in, because the nurses would take him out into the corridor.
Dr. Matthay said the rash could be some chronic GVHD. She said if it was a normal kid she would assume it was just some eczema (http://www.emedicinehealth.com/Articles/8545-1.asp), but with her history, she wanted to start treating it right away with some hydrocortisone. They'll take a close look at her in clinic on Wednesday. We wouldn't really mind some mild chronic GVHD as a tonic against recurrent leukemia, and I think we've relaxed a little bit since Dr. Horn told us she was probably past the point where we need to worry about life-threatening GVHD. Still, it's comforting that her intestinal symptoms have resolved for now, and a few applications of the steriod today really seem to have helped.
Another story I wanted to pass along is that it's now official that Waah Baby has lost her voice. She's Mina's favorite baby doll, and she would alternate between crying and laughing when you squeezed her chest. Whenever Waah Baby cried, Mina would pick her up and put her on her shoulder and pat her back and say "Shhhhh", just as serious as can be. It had been obvious for awhile that something was going on with Waah Baby, because her laughing and crying noises were becoming less and less intelligible. I kept waiting for Mina to say something, but she never let on that she noticed it. In fact, she was able to tell the difference between a laugh and a cry long after the point where it all just sounded like moans to me. Finally, one day Waah Baby kept moaning and moaning. After about five minutes of it, Mina finally looked at me and said "Turn Waah Baby off!" There's no on/off switch, but luckily she stopped soon. And shortly after that, she stopped making any noise at all. It's too bad that the makers of this particular doll didn't see fit to provide a way to change the batteries, but Mina Brigitta still plays with her just as much as she ever did, changing her diaper and her dressing, giving her a bath, putting her to sleep. Just tonight she was bathing her in the tub that waters the Christmas tree (before we put up the tree and filled it with water).
We also got our tree today. Mina and I towed the Radio Flyer wagon the three blocks down to Cole Hardware, where we were lucky enough to pay $55 for a seven-foot noble fir. After almost not getting a tree last year, I asked Keri this year if she just wanted a small tree, and she said "No way!" We definitely have the Christmas bug in this house. Mina was a bit concerned when we laid it the tree in the wagon. She asked several times if it was going to stand up, and then again at home when we laid it in the foyer while we ate dinner. She shrieked in joy when we arrived home with the tree, and it was all we could do to get her to sit down for dinner. Which was important because Grandma Lyn is in town, and she and Keri spent all day in the kitchen making a big turkey dinner, complete with stuffing, mashed potatoes, sweet potatoes, homemade rolls, and wassail. The house still smells wonderful. We finally got the tree upright at about 8:00, and Mina didn't settle down for bed until well after 9:00.
Still some ups and downs healthwise. Mina finally got rid of her intestinal symptoms early last week. On Tuesday she had about three bowls of oatmeal for breakfast and a hamburger for lunch, and she hasn't looked back since. Her stools have returned to normal as well, which is really a big relief. Isaac, on the other hand, has been having some trouble again, and now all of a sudden they both have snotty noses, so they might be getting another cold.
More troubling, she's had a dry, itchy rash forming around both of her ears, and some small bumps on her face. It started about mid-week, and by Saturday morning it had progressed enough that I wanted to have her looked at. So I bundled Isaac and her into the double stroller and hiked up the hill to the hospital. We went back to Seven Long, since the clinic was closed on Saturday. When Mina saw that we were turning left toward the hospital instead of right toward the clinic, she clapped her hands. When I asked her why she was clapping her hands, she said "because we're going to the hospital!" It's kind of fun to go in there, because each time we do we see a nurse who hasn't seen her since June. They all make a big fuss about her, especially her hair. She even remarked to Mama later on how much the nurses liked her hair. Isaac gets a lot of attention too -- many of them actually saw more of him when we were in, because the nurses would take him out into the corridor.
Dr. Matthay said the rash could be some chronic GVHD. She said if it was a normal kid she would assume it was just some eczema (http://www.emedicinehealth.com/Articles/8545-1.asp), but with her history, she wanted to start treating it right away with some hydrocortisone. They'll take a close look at her in clinic on Wednesday. We wouldn't really mind some mild chronic GVHD as a tonic against recurrent leukemia, and I think we've relaxed a little bit since Dr. Horn told us she was probably past the point where we need to worry about life-threatening GVHD. Still, it's comforting that her intestinal symptoms have resolved for now, and a few applications of the steriod today really seem to have helped.
Another story I wanted to pass along is that it's now official that Waah Baby has lost her voice. She's Mina's favorite baby doll, and she would alternate between crying and laughing when you squeezed her chest. Whenever Waah Baby cried, Mina would pick her up and put her on her shoulder and pat her back and say "Shhhhh", just as serious as can be. It had been obvious for awhile that something was going on with Waah Baby, because her laughing and crying noises were becoming less and less intelligible. I kept waiting for Mina to say something, but she never let on that she noticed it. In fact, she was able to tell the difference between a laugh and a cry long after the point where it all just sounded like moans to me. Finally, one day Waah Baby kept moaning and moaning. After about five minutes of it, Mina finally looked at me and said "Turn Waah Baby off!" There's no on/off switch, but luckily she stopped soon. And shortly after that, she stopped making any noise at all. It's too bad that the makers of this particular doll didn't see fit to provide a way to change the batteries, but Mina Brigitta still plays with her just as much as she ever did, changing her diaper and her dressing, giving her a bath, putting her to sleep. Just tonight she was bathing her in the tub that waters the Christmas tree (before we put up the tree and filled it with water).
posted by Arne Olson @ 10:01 PM
2 Comments:
At 8:53 AM PST,
Anonymous said…
Dearest little family,
What fun to catch the holiday spirit via your writings. I share Keri's addiction to Christmas tunes during this wonderful time of year. They're so uplifting! And, there's nothing like Christmas through the eyes of a child. Thanks for sharing.
Thrilled to hear that things are going relatively well with Mina B. Our family continues to pray for her continued healing.
Love and warm wishes to all of you,
Aunt Paulene
At 9:25 AM PST,
Anonymous said…
My sentiments exactly!!!! I am giggling as I read these past few blogs, and I wish I could spend just one day with all of you, but especially the kiddos! There is no better way to experience the holiday spirit than through the eyes of little ones.
Love and prayers to you and the others who are going down the same path you have traveled.
Hugs and kisses
A. Bonnie
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