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.
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.
posted by Arne Olson @ 10:29 PM
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