Day +336: A big week

So much going on these days. I can't believe I forgot to write last time that we had weaned Isaac! Keri's being away for the weekend really did the trick. He was really mad when he woke up at 3:30 AM in the hotel room in Monterey and Momma wasn't there to nurse him. But he pulled it together after 15-20 minutes, and I convinced him to take a sippy cup of milk instead. The next night he woke up kind of wimpering, and after a few minutes asked for some milk. The third night he woke up and didn't even wimper, just asked for the milk. The fourth night we were back at home, and he sacked out for the whole night for the first time in his life! He still sometimes wakes up and asks to nurse, but otherwise he's adjusting very well.

Then this week Mina decided to potty train herself! She'd been pretending to go potty in the closet for quite a while, but we hadn't been able to convince her to use the toilet. Then Monday morning she refused to put on her diaper -- said she wanted her big girl underwear instead. So Keri took her out to the store and she picked out a little yellow potty with a teddy bear on it, and by Tuesday morning she'd already gone peepee in it three times. She's used it all week and hasn't had any accidents at home. But today was her first day going out without a diaper, and it was a disaster. She wouldn't use the big toilets, even though Keri brought an insert, and she ended up both peeing and pooping in her pants. Keri said she was really upset. Poor thing, she's been so proud of herself all week. She's been announcing to everyone "I go poopoo in the big girl potty!"

The other big news came from her clinic appointment on Tuesday. She wasn't schedule to go in this week, but I insisted Keri take her in because of the strange red bump on her neck. Turns out she has ringworm, which is a relatively harmless fungus that can be treated with athlete's foot medication. That's a relief. But the big news is that she gained three pounds since her last appointment! She's now up to 16.6 kg, which is finally above the 14.9 she weighed in January of 2005. We knew she'd been gaining weight, and in fact I had just been announcing to everyone that I was officially no longer worried about her eating. But we didn't expect that big a jump. Keri also finally got a chance to talk to Dr. Loh about the stenosis in Mina's subclavian vein, but it sounds like they haven't really figured out what to do. Apparently the vascular surgeons at UCSF have very little experience with children, so we might need to be seen somewhere else if we decide treatment is necessary. For now she's still getting aspirin and seems fine.

The kids have been having fun with Kendra all week, and in fact Mina Brigitta wanted "my friend" to hold her yesterday when she woke up crying from her nap (as she sometimes does). They went to the Bay Area Discovey Museum in the morning, and Keri said Mina made a little friend. Keri was watching her play outside, glanced away, and when she looked back Mina had taken off up a little hill with another girl her age. They played together for quite a while and really got along well. Keri got to know the parents a bit, and they're going to set up a playdate soon. I got home late from a business trip, and saw that Mina was in bed with little plastic sandwich bags on her feet. Kendra said they were "slippers", and she wouldn't take them off.

Day +331: A visit from "my friend"

Grandma and Grandpa left on Tuesday, and the kids were very sad to see them go. She may have been shy at first, but after spending the whole weekend together, Mina Brigitta was giving great big bear hugs to both Grandma and Grandpa on Tuesday. It's nice that we're going to see them again so soon. Then our niece Kendra arrived on Thursday. Kendra is a sophomore in high school in Athol, Idaho, and she spent her spring break with us last year, mostly helping out in the hospital as Mina Brigitta was inpatient during her maintenance round of chemotherapy. She enjoyed herself so much, she decided to come down for spring break again this year. Except this year we can actually go out and do some fun activities! The activities have so far tended to have a kiddie focus -- today we went to "Fairyland" in Oakland for a puppet show -- but Kendra doesn't seem to mind. She's great with the kids, and Mina Brigitta won't leave her alone. She doesn't call her Kendra, she calls her "my friend". As in "We have to go pick up Momma and my friend!" Kendra arrived at a good time for us, because the kids' music class and cooking classes ended and I'm having to work a lot last week and this coming week.

Mina continues to do very well. She has lots and lots of energy these days, which is really fun to see. Her skin tone is looking better and better. I can still notice a definite difference between her skin tone and Isaac's, but she now has a nice pink hue to her cheeks and she looks really healthy. And maybe it's just me, or maybe it's the aspiring she's been taking, but I think her face doesn't look quite as puffy as it has. We haven't managed to connect with Dr. Loh yet about possible treatment, which is just fine. Keri will probably see her Tuesday; Mina has a strange looking bump on her neck that we want someone to look at. Hopefully it's nothing, but she's at high risk for skin cancer due to the radiation therapy, so we don't want to take any chances.

Mina Brigitta is in the age where she wants us to tell her stories. This is a bit challenging for us, since we don't have a lot of experience making up stories. Guess we'll have to learn fast. The other night she asked me to tell her a story, so I told her the one that is most often on my mind, about the little girl named Mina Brigitta who got very sick and had to go to the hospital but then she got better and came home and lived happily ever after. I figured that would have some resonance since she still talks about going to the pole house and loves to read "Curious George Goes to the Hospital". Well, she listened politely, but then when I finished she said "Tell me a story about a bunny!" Nothing like a 2 year-old to help you keep your perspective on what things are important in life!

Day +324: Having a great time in Monterey

Logging in from the hotel to say we're having a wonderful time. We left San Francisco about 7:30 PM Friday and arrived here in Monterey at about 9:30. The kids eventually konked out in the car but woke up when we got to the hotel. Then they were totally wired of course, and didn't sleep until after midnight! I finally put on the Cartoon Network and Mina snuggled in right away. They were very tired on Saturday of course, and Isaac slept through most of his visit to the aquarium. He loved it when he was awake, though. We went to the Outer Bay tank at first, which is a huge tank where they have giant yellowfin tuna, soupfin and hammerhead sharks and big sea turtles. Isaac kept saying "Wow!", unprompted. But 5 minutes of the dark jellyfish exhibit was enough to put him down for the count.

Mina had a great time, meanwhile. She just kept going and going and going, even when we knew she had to be exhausted. She had this idea that she wanted to hold a fish in her hand, and she kept saying it over and over again. They did have a hands-on tank where she got to touch some starfish and hold a hermit crab, and that seemed to satisfy her. She also watched the sea otters being fed and spent an hour or so running around in the kids play area. I always look closely when there are other kids her age around, and she's definitely behind physically. Not too surprising given all she's been through, but still unfortunate. We're planning to look into some physical therapy for her sometime soon. After the aquarium, we bundled up against the cold ocean breeze and walked along the waterfront for awhile, with me pushing the kids in the stroller and Dad pushing Mom in the wheelchair we rented for the weekend. Mina was so tired that she feel asleep in the stroller on the way back at about 5:30 and slept right through, barely stirring, until 7:00 AM.

We decided to stay an extra day down here, so today we went to Point Lobos State Park, then stopped and had lunch in Carmel-by-the-Sea on the way back. Had a beautiful walk and saw some sea otters, seals and sea lions. Mina got to walk on a real beach for the first time in a long time, and did she ever love it! She had on her rubber boots, and she would say "Can I step in dat watoh?" I'd say yes, and she'd go stomp in it and say "splash splash splash!". She wanted to bring home some dead kelp, but I had to draw the line there. She didn't nap again today, so tomorrow should be interesting. Isaac I think is missing his mama. He was kind of clingy with me today, and was a bit tired and out of sorts. But he had a fun day too.

Momma gets back tomorrow afternoon, and the kids will be thrilled to see her. I will too. It's been having having them with just Grandma and Grandpa, but they're definitely exhausting.

Day +321: An eventful week

Between, the MRI, Grandma and Grandpa coming, and the night we spent in the emergency room last night, this has been some week! Mina Brigitta was totally exhausted tonight and fell asleep on Grandma's lap while reading "Curious George Flies a Kite", which is her latest favorite.
First things first: everything is fine. Mina and Isaac have both had runny noses this week, and Mina had developed a slight cough. Last night when I checked on her around 11:30, she seemed pretty warm to me. Then she got up out of bed, which is totally out of character, and was talking up a storm and practically running around the apartment. So I checked her temperature and it was 38.6, or 101.5, which is above the official 38.0 threshold, even though it's not a particularly high temperature for a small child. I paged the on-call physician, and he hemmed and hawed a little bit but finally said she should probably be seen in the ER since her immune system is not yet fully functioning. So I bundled her up and walked her up the hill in the stroller. They checked her in, examined her, placed an IV, drew blood and urine cultures, took a chest X-ray, and gave her an IV infusion of an antibiotic. Mina was really feeling quite fine, and thought the whole thing was a big adventure. The most traumatic moment was the IV placement, of course, but what really upset her was that she didn't get a "Pooh" (bandaid) immediately after they were finished (because they needed to keep the IV in place for the antibiotics). Unfortunately, the visit took four hours, so we got back home at 4:30 AM.

The other medical event that happened this week was Mina Brigitta's MRI for her subclavian vein blockage. The appointment was for late Tuesday afternoon, so Mina wasn't allowed to eat anything after breakfast. Of course no one was available to read it when they were finished, and we waited anxiously all day Wednesday to hear the results. I finally called up to UCSF around 5:00, and Dr. Horn rushed down to radiology and called me back a few minutes later to tell me that the preliminary reading is stenosis, or narrowing, of a 1.5 cm section of the right subclavian vein, and not a clot. The image also doesn't show any areas without blood flow. This is the news we'd been hoping for, so it was worth the wait. Dr. Loh is planning to consult with the vascular surgeons on Friday to see if they recommend any treatment. Her face seems less swollen this week, so I'm hoping that they continue to let nature take its course and allow new vein growth to make up for any permanent loss of blood flow.

Then today, Grandma and Grandpa arrived from Wenatchee! Mina was so excited about their coming that she didn't nap despite being up for four hours during the night. She kept talking about them all day, and Keri said she talked nonstop on the way to the airport. A major topic was my mother's broken ankle (which happened last week while skiing in BC). She kept saying "Grandma Judy hurt her ankle!" She remembers when she hurt her ankle: "I fall down the stairs!" Another thing she kept saying was "Grandma and Grandpa my friend!" I think she remembers them pretty clearly from the last time they were here in October. They're here until Tuesday, which is a nice length of time. We're heading to Monterey for the weekend to visit the Monterey Bay Aquarium, where we have a membership (thanks Kari!). I'm really looking forward to getting away for a weekend and spending some quality time with the extended family. Keri decided to make her own getaway, and is headed to Chicago for the weekend to visit friends from the academic world. We'll miss her, but it will be good for her to reconnect and the break will probably be good for her.

Day +317: Blood flow not recovering

Mina Brigitta had her clinic appointment yesterday while I was away on a business trip. Keri said she was a very big girl. She's getting to be so mature that the Benedryl she got before the infusion of IVIG didn't put her to sleep like it usually does. So she spent the whole say at the clinic until 4 PM without napping. Isaac went to Kaaren's house where he usually goes on clinic days. Kaaren is a terrific caregiver who was introduced to us by our wonderful pediatrician. She absolutely adores Isaac, and the feeling appears to be mutual. Kaaren also watches her granddaughter Mikaela, who is two and a half and who gets along really well with both Isaac and Mina. Isaac had such a good time yesterday that he didn't nap either, which is unheard of for him. So they both fell asleep in the car at about 4:30 and slept right through until morning.

The good news from Mina's appointment is that her counts looked normal. She's totally off of immunosuppressents now and has been for a week, and that appears to be going fine. We gave her the last dose of acyclovir and fluconozole this morning. Now the monthly infusions of IVIG is all that she'll get. We can probably look forward to her getting sick on occasion, since she won't have the antiviral in her system any longer, but that's a small price to pay to be free from meds altogether. Dr. Loh also said we should go back to Dr. Aicardi, our pediatrician, for some of her appointments, but she'll be able to recognize better whether Mina Brigitta is having any developmental issues.

The bad news from the appointment today is that the blood is not improving in the sub-clavian vein; in fact, it's closer to 100% occluded now instead of 90%. There is evidence of new veins growing, and Dr. Loh said she can function fine if the vein never returns to normal. But they would have expected any irritation from the catheter to have resolved by now, so they're a bit more worried about the possibility of a clot. So we're giving her children's aspirin every day now, and they've scheduled an MRI for Tuesday. This is definitely worrisome, so we'll just hope that Tuesday shows no clot.

Isaac had to go to the clinic last week too, and Keri said Mina Brigitta was very interested to see the tables turned. He had to get some immunizations, and Mina sang Twinkle Twinkle Little Star to him and said "You're OK!" when he was crying. Then she was telling him he would get a "Pooh", which is her word for a bandaid. Isaac cried of course, but can't have been too traumatized by it because in the car on the way home he pointed to his arm and said "More!" He had his first haircut last week too! It was getting in his eyes and was pretty long in back, so it was time. Keri took him to her sylist, who was very patient and did a very nice job. Keri was traumatized at first thinking she had cut off all of Isaac's curls, but they came back with the first washing. He looks much more like a little boy now with short bangs. In fact, he's pretty much turning into a boy before our eyes. He's talking and singing up a storm now, and he's very articulate. He can repeat almost any word you say to him, and he's really enjoying the discovery that you can use words to communicate. And he and Mina are so cute together. Now the first thing he says when he wakes up in the morning is "Sissy?" And the first thing she wants to do is go and see Bubba.