Day +303: No appointments this week

I'm not sure how it happened, but Day +300 slipped by us without our noticing. We did pause briefly to think about the 9-month milestone on January 29. Ten months will be coming up soon, but I'm not sure whether it would be on the 28th or the 1st. This was a big week, because Mina Brigitta did not go to the doctor, even though it had been two weeks since her last appointment. She's gone to monthly appointments now, so she's not scheduled to go this week either. I was just thinking I can't remember the last time she went a full week without a single appointment. There may have been one that I missed, but this week we barely even thought about the doctor. We're still tapering the Cellcept, which is her last immuno-suppressive drug, and it still seems to be fine. Her skin is very dry, but it's not rashy and she certainly hasn't lost any of her appetite. So far so good. Would be nice to get her off the immuno-suppressants.

We're having lots of fun these days. There's been a musical explosion around our house with the Music Together class and CD. We listen to that CD over and over. The downside of getting your kids into their own music is that they don't want to listen to yours anymore. This morning Keri had on classical music, and Mina threw a screaming, crying fit because she didn't want to listen to it. She finally got over it, and she's such a sweetheart, after a while she told me a couple of times, "I yike dis music now". Isaac sings "Trot Old Joe" all the time, and when he sings "Whoa, Joe!" he holds the note on the "Joe" for like five seconds. He just loves being sung to, and if you stop before he's ready, he says "Mo!". I went to their class on Monday for the first time, and it was a hoot. Mina mostly sat on my lap, except when the teacher came with the box of instruments. Then she let out a shriek that I thought was going to break the windows and dove into the pile of instruments and kids to get a drum for me. Isaac just kind of stands there and stares at the teacher while she sings. But I noticed that over time he kept getting closer and closer to the teacher, until about halfway through he was standing right in front of her not taking his eyes off her.

Mina must have reached some developmental milestone, because the other day while we were reading a book she started asking me the name sof all the characters in the picture. I forget what the book was, but there were a lot of characters in the picture and I had to make up names for each one of them. And remember them. Then the other day she decided that the new waah baby was named "Bubba". I suggested "Waah Bubba", thinking I was being very clever. But no, the doll's name is just Bubba. This is the first time she's given a doll a name, other than Waah Baby and Home Baby which are descriptive and not abstract.

Isaac is talking more and more. He says all kinds of words now: "shoe", "socks", "yes", "no", "more", "hello", "bye-bye", and lots of others. He's also very good at mimicking what you say. One new word we're not quite so happy about is "cookie". This morning he was saying it over and over again, not believing us that there weren't any cookies in the house. He and his sister really love each other, it's pretty amazing. She's always loved giving him hugs (usually too rough), but lately he comes up and gives her hugs and kisses too. They do have their moments of course. Another new word of his is "scus-zoo" when you're in his way. Not exactly sure where he got that one from. But the other day Sissy was in his way when he was walking down the hallway, so he said "scus-zoo" and gave her a good shove. Sissy probably had that one coming after all the times she's shoved him down.

I wanted to say thanks to everyone who has been praying for Lily Claire Foster. She was discharged to the Ronald McDonald House on Saturday at Day +78. She's had a seemingly endless string of serious complications including bacterial sepsis, Grade IV GHVD, an infection with the adenovirus and pneumonia, but she seems to be firmly on the road to recovery now. She must be one tough little girl.

Day +294: Another good week at the Olson-Olsen household

Things are moving right along here. Mina Brigitta still is having lots and lots of energy, showing no signs of anything slowing her down. We're still tapering the Cellcept, and her skin has been a bit dry, red and blotchy in places this week, but nothing that screams out "GVHD". We're kind of suspecting the sunscreen, since the redness is mostly on her face and neck. I'd been remarking to Keri how wonderful her skin was looking lately, and it turns out she'd gone a number of days without using sunscreen, because of bad weather and not really spending much time outside. So we'll be trying another new sunscreen soon (we've already gone through three or four).

Even though this wasn't clinic week, Mina Brigitta had two appointments and I have to report what a big girl she was. She went to the orthopedic surgeon on Wednesday, and she let Keri go outside the room while she held still for her X-rays! Keri said the staff was totally amazed, and when they came out, the nurse said she was very "self-possessed". When I asked Mina if she had the X-rays taken all by herself, she said matter-of-factly, "Yeah. One standing, and one lying down yike dis!" Then I think she might have said something like "Just yike Curious George." I guess endless readings of Curious George Goes to the Hospital are paying off. The great news from the appointment was that her hip looks normal. She'd had some avascular necrosis in her femoral head -- basically, loss of blood flow to the leg bone right where it fits into the hip socket -- due to the high dose of steroids she was on. There was some real concern that it would progress, especially because she was so gimpy when she first came home. But the doctor said her X-ray looked normal, and they would have already seen it progress if it was going to, and he doesn't need to see her again. So we were very excited to hear that.

She also went to the dentist on Thursday. She had all of a sudden started screaming and refusing to allow me to brush her teeth. I was thinking it was just a toddler thing, but then I got worried that maybe she had some decay that was causing pain and she just couldn't really express it. So we figured it wouldn't hurt to get her to the dentist anyway. Mina Brigitta was a really big girl again. She opened her mouth for the dentist, and even let him put a mirror and a scraper in there. Then she got a sticker of "Bert and Arne" which she saved out to give me when I came home from work. The dentist said she has the beginnings of some decay on her molars, but nothing they want to treat just yet. But he also had some really good news. Tooth problems occur in most patients who received radiation therapy and are more common the younger the patient is. In extreme cases the adult teeth might not come in at all. But he said that usually happened in cases where the radiation destroyed the salivary glands. And he said Mina Brigitta's salivary glands appeared to function just fine. She'll probably have other dental problems, but it would be nice if she didn't have to go through life with just her baby teeth.

Isaac is feeling much better this week, and both the kids have been making up for lost time in the eating department. Isaac is still having trouble with his bowels, though, and Amber thought we should get him checked for the c. diff. infection, which can pass through saliva. Dr. Horn said it was virtually impossible for him to get it, but he's probably had a lot more exposure to it than almost any other healthy kid, so we will probably get him tested anyway. The poor kid has sensitive skin, and his bottom is really inflamed these days.

He is now singing a second line to "Twinkle Twinkle Little Star", so now he sounds kind of like "Uppa buvva wo wo why, eye-ka di-mo wo wo wo". He's also singing the song "Trotman Joe", which goes something like "Trotman Joe, Trotman Joe, who's the best horse in the country oh." Keri says when they do it in music class, they all lean back and say "Whoa!". So Isaac sings "Doc oh doe, doc oh doe" then he kind of pauses, and then he leans way back and says "Whoa!". Sometimes Mina joins him and they sit side by side on the floor, drumming their thighs to the beat of Trotman Joe, and leaning back and going "Whoa!" It's very very cute. Isaac is in full monkey mode, and he's able to do a lot more these days. Mina is still pretending she's a cat, so now she spends a lot of time crawling around meowing. Tonight Isaac was doing it too, so both kids were crawling around on the floor meowing for about 20 minutes.

So lots of good news here. We're not tentatively planning a trip to the Northwest for Mina's 3rd birthday in mid-April. Lots can happen between now and then, but we could really use a break and it would be wonderful to connect with family and friends again outside the hospital. So we'll be keeping our fingers crossed.

Day +286: Mina healthy, Isaac not

Mina Brigitta got a clean bill of health at her checkup this week, despite having had some sniffles and a cough over the last week or so. She saw Dr. Loh this time, her oncologist, who said her ears looked great and her lungs sounded clear. She also remarked about Mina's face looking less puffy. The veins in her upper chest also seem less prominent these days, so it looks like the blood is flowing again. This was the first time that Mina Brigitta had to have an IV placed to receive her medicine. We talked about it some beforehand so she definitely knew the poke was coming. Keri said she cried, of course, but was a very brave girl. Unfortunately they weren't able to draw blood once the medicines were done, so they had to go back today for another poke and a blood draw.

The good news is that when the transplant doctors talked about Mina's case during their Wednesday meeting, they agreed that, because she hasn't shown any signs of chronic GVHD, they could start tapering down her Cellcept! Cellcept is an immuno-suppressant and is the primary reason why Mina has to get the pentamidine every other week as a prophylaxis against a form of interstitial pneumonia that can occur in immuno-compromised patients. They put her on a month-long tapering schedule, and my understanding is that once she's done with it, she'll either be able to stop taking pentamidine or switch to an oral drug. She'll still need monthly treatments of IV immunoglobulin because the latest results we got back this week still didn't show enough B-cell function. They'll check again in a month. The bad news is that she appears to have another c. diff. infection in her gut. We had kind of been expecting it after she was on amoxycillin for a week, but it took a long time to show up so we were hopeful she would avoid it this time. She does not like the Flagyl she has to take for it, and it's no fun changing four or five poopy diapers a day, so it's a drag all the way arouond.

Isaac isn't faring quite as well this week. He's had a juicy cough for a week or so, and he was feeling pretty bad on Sunday with a fever of 102. He perked up again earlier this week, so we thought he was moving beyond it, but he was miserable and feverish again tonight. Keri will probably take him to the pediatrician tomorrow if he's still feverish to make sure he's not developing an infection. He's pretty good-natured when he's up and around so it's a bit hard to tell how bad he's feeling. But her cries a lot more than Mina ever did at night and he doesn't like being uncomfortable when he's trying to sleep, so it's been a bit of a rough week for Keri. This is the second time both kids have gotten sick at the same time and Isaac has gotten by far the worse of it, so that leaves us feeling pretty good that Mina is well-protected with the IVIG and acyclovir.

Mina's play games are becoming more and more elaborate. She's been saying for a while that she's daddy's cat. She doesn't meow or scratch or anything, but she's very insistent that she's a cat. Lately she's started being other animals too. Everything is very serious. The other day she was changing Waah Baby's diaper, and left the "dirty" one on the floor. Later I tried to put that one on her, and she was very insistent that I not do it. "No, that one's poopy!" she kept saying. She also is doing "makeup" now. She takes an empty spray bottle and squirts it on her face just like Momma does. I'm also still finding little plastic bags filled with washcloths and other things around the house. Tonight I found one with a little wooden mailman in it. I was also picking up her demin purse and peeked inside to find a set of plastic keys, a little "makeup" container, and a syringe. Another funny thing she's doing lately is moving chairs around. Tonight I had to collect the dining room chairs from all over the house and put them back by the table. She is very very busy in her environment these days. It's really fun to see.

Isaac is doing more and more things too, of course. Teri and the kids brought down a little aluminum pot and pan set, complete with spatulas, whisks and a colander. Isaac loves that thing. He's just starting to really put things in other things, so he loves putting something in a pot, closing the lid, then taking the lid off and taking it back out again. Mina got a set of realistic plastic figurines for Christmas from Katy, Awais and Emma, and the other day Isaac was filling up his dump truck with them. Mina still likes to play on her own and Isaac doesn't understand that, so there's some conflict. But they're starting to play together some too. The other night Mina was frustrated when I was reading a book, so she squealed "Read!" and kind of smacked the book with her hand. Isaac was in my lap too and he thought that was hysterical, so he started saying "Ree" and smacking the book. This has become an ongoing game, them taking turns saying "Ree" and smacking the book. It's a bit annoying, but it's also a brother-sister bonding moment, so I'll let it go until I really can't stand it anymore.

Day +280: Noticeable change in appearance

We've been watching Mina Brigitta carefully over the last week, but everything seems just fine. We noticed pretty much right away that her face started to look a little less swollen, and then Saturday morning her tummy looked flatter than it has in a while. Of course, "flat" is relative; Mina Brigitta had a round tummy even she was on IV nutrition and hadn't eaten anything in weeks. But there was definitely a noticeable change from earlier in the week. Her face seems to swell up a bit still when she sleeps, but is fine after being up for awhile. We had definitely noticed that her face was puffy, but I don't think we realized quite how much it affected her features.

Mina Brigitta is enjoying having her tubies out. She still likes to lift up her shirt and say "no tubies!" She gets to take a bath in deeper water now, and we don't have to cover her chest with plastic wrap first. Even tonight, a week later, she said "don't have to flush my tubies!" We'll see how much she likes it next Wednesday when the nurses have to place an IV to give her pentamidine. She still likes flushing her babies' tubies and changing their dressings, though.

Anta Teri visited this weekend with cousins Nicholas (14) and Kennedy (10). Everyone had a ball. My kids got more attention than they knew what to do with. Nicholas and Kennedy are really remarkably patient with the kids. They both laid still for long periods of time while Mina Brigitta covered them with blankets and clean clothes out of the laundry, flushed their tubies, changed their dressings, etc. etc. etc. They were very cute reading books to the kids too. It was fun to hear Nicholas reading The Very Hungry Caterpillar to Isaac while I shaved for work on Monday morning.

We went to Melissa and Casey's house on Saturday night, so Mina Brigitta got to play with Bliss as well. By Sunday morning, she must have needed some down time, because she kicked everyone out of the back room, closed the door, and went to work on her babies for about two hours. I peeked my head in there at one point, and she had on the surgical mask and gloves, and there were about 25 of the little alcohol pads open all over the floor. She was changing Waah Baby's dressing, sitting on the footstool just like Momma does while Waah Baby sat on the chair just like Mina does. She told me what she was doing and then said "Gick out!" and closed the door behind me.

She was sad to see everyone go. She's never done this before, maybe because she's so used to people coming and going, but Tuesday morning, the day after the Paylors left, she asked where Nicholas and Kennedy were. She's had a busy week with music class and playgroup, but Keri says she's asking now when Grandma is going to come again. The other cute thing she did after listening to Nicholas and Kennedy all weekend was start calling me "Uncle Arne".

We have definitely verified that Isaac is singing "Twinkle Twinkle Little Star". One of our caregivers sings that to him whe she's at her house, and he's started singing one line of it. It's more or less in tune, and it sounds kind of like "up ubba va wo de de". We also have a book that Eric and Astrid sent for Mina where we sing it. That book is now competing with Very Hungry Caterpillar for his favorite. Today when I left, Keri had on the CD from the kids' Music Together class. Mina was kind of wandering around doing whatever, but Isaac was standing right in front of the stereo and really focusing on the music while he swayed back and forth. Unfortunately, he has a serious cough going right now, and Mina is starting to develop one as well, but they both seem to be feeling fine so hopefully it's just another minor cold.

So January has come and gone and everything is still going fine. We were even able to attend my company's holiday party last Friday after missing it two years running. But they had to add us back on to the guest list at the last minute after Mina was released from the hospital. It has already felt a little strange to be out of the hospital at this time of year, and I'm sure the feeling will only intensify as spring gets closer. I suppose the next major milestone is the one-year mark, in about three months. We'll just keep crossing our fingers until then.