Days +146-148: good times
Keri picked up a little wooden table with two chairs. The chairs are a little high -- both kids fell off and bonked their heads on the linoleum floor -- but Mina Brigitta loves it. Mina always calls out "Dadda!" as soon as I walk in the door. Today I heard "Dadda!" and then "Yook at this!" Then I heard this scraping sound that lasted all the way up the stairs. Mina Brigitta was pushing the table out of the kitchen to the top of the stairs so I could see it. She was so excited she was practically shrieking as she told me about the table.
Saturday I took the kids to the carousel in Golden Gate Park again, then for a long walk trying to get them to sleep. Mina Brigitta rode on the horse all by herself, but only for half the ride, then she wanted "up with Dadda". But she wanted to ride it again, so we did it twice more sitting on the bench. Mina had on a big sunhat, sunglasses and mask, so she definitely stuck out. Kids always stare. Adults too, for that matter. Some little girls were trying to say hi, but Mina was being shy. Then it turned a bit harsh, as they were taking turns running up and saying hi, then running away. At that point I took her sunglasses off so they could see her eyes, and the game kind of fizzled out. Later they ended up sitting near us on the carousel, and they seemed very sweet and curious. We also saw lots of squirrels on the walk, the kind that come right up to you because they expect you to have food. Mina Brigitta was excited to see "Nutkin" and "Twinkleberry" (from her favorite Beatrix Potter book, "Squirrel Nutkin"). We didn't have any food to give them, so Mina spent the rest of the walk chanting "No num-nums for you! Sorry!"
Yesterday we took a walk at Chrissy Field, which is a beach area on the bay just east of the Golden Gate Bridge where she used to play in the sand. She walked a good distance along the gravel path, and then rode on my shoulders for a while. It was a beautiful day in the city; it's so nice that summer is over so the cold fog is lifting. Then we went to one of our favorite little seafood restaurants in the Marina district, and sat outside shivering on the sidewalk. Mina Brigitta stuffed herself full of sweet potato fries and sticky rice with teriyaki sauce. As we were leaving, she said "Sissy full! Sissy big full!"
Today Keri took them to the playground, and she insisted on going to the hamburger place afterwards, even though she'd had a good lunch and wasn't that hungry. Then they passed the playground on the way back to the car, and Mina wanted to go back in. Keri told her she could go down the slide five times. So she did -- she counted them out, and then after five was ready to go!
Her latest rash spread a little bit onto her shoulders and neck, but seems to be resolving with twice-daily treatments of hydrocortisone. Still no indication of what's been causing it, and hopefully we'll never find out. They had been planning to drop her cyclosporine level again, but decided to hold off as long as the rash was active. The other thing is that she's still losing weight -- down from 13.7 kg to 13.4 in two weeks, about two thirds of a pound. She's definitely looking thin, but it's hard to worry too much when she's in such good spirits.
Saturday I took the kids to the carousel in Golden Gate Park again, then for a long walk trying to get them to sleep. Mina Brigitta rode on the horse all by herself, but only for half the ride, then she wanted "up with Dadda". But she wanted to ride it again, so we did it twice more sitting on the bench. Mina had on a big sunhat, sunglasses and mask, so she definitely stuck out. Kids always stare. Adults too, for that matter. Some little girls were trying to say hi, but Mina was being shy. Then it turned a bit harsh, as they were taking turns running up and saying hi, then running away. At that point I took her sunglasses off so they could see her eyes, and the game kind of fizzled out. Later they ended up sitting near us on the carousel, and they seemed very sweet and curious. We also saw lots of squirrels on the walk, the kind that come right up to you because they expect you to have food. Mina Brigitta was excited to see "Nutkin" and "Twinkleberry" (from her favorite Beatrix Potter book, "Squirrel Nutkin"). We didn't have any food to give them, so Mina spent the rest of the walk chanting "No num-nums for you! Sorry!"
Yesterday we took a walk at Chrissy Field, which is a beach area on the bay just east of the Golden Gate Bridge where she used to play in the sand. She walked a good distance along the gravel path, and then rode on my shoulders for a while. It was a beautiful day in the city; it's so nice that summer is over so the cold fog is lifting. Then we went to one of our favorite little seafood restaurants in the Marina district, and sat outside shivering on the sidewalk. Mina Brigitta stuffed herself full of sweet potato fries and sticky rice with teriyaki sauce. As we were leaving, she said "Sissy full! Sissy big full!"
Today Keri took them to the playground, and she insisted on going to the hamburger place afterwards, even though she'd had a good lunch and wasn't that hungry. Then they passed the playground on the way back to the car, and Mina wanted to go back in. Keri told her she could go down the slide five times. So she did -- she counted them out, and then after five was ready to go!
Her latest rash spread a little bit onto her shoulders and neck, but seems to be resolving with twice-daily treatments of hydrocortisone. Still no indication of what's been causing it, and hopefully we'll never find out. They had been planning to drop her cyclosporine level again, but decided to hold off as long as the rash was active. The other thing is that she's still losing weight -- down from 13.7 kg to 13.4 in two weeks, about two thirds of a pound. She's definitely looking thin, but it's hard to worry too much when she's in such good spirits.

2 Comments:
At 5:11 PM PDT,
Anonymous said…
thanks for the blog. it is still geat to hear about your girl. and am so glad that you are experiencing some normal family stuff. God bless and love to you all. tutu and richard
At 11:32 AM PDT,
Anonymous said…
Hello everyone - I am so excited that Mina is starting to feel so much better. I love all of the stories! You are always on our mind. Lots of hugs sent your way!!
Bryan Lisa Bailey and Jack
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