Friday, February 03, 2006

94 pounds, Long cane walk, Disneyland respite

Denise weighed in at 94 pounds today, and only threw up once. I told her that I'm glad to hear that she's putting on weight and looking fuller. Men, do not attempt this at home. Part of me thinks that the scale was off to put on that much weight during the week. Part of me just wants to take another bit of good news as just that. The tube feeding and the ice cream at dinner seem to be doing well. If Denise's problem is MSA syndrome, then the increased weight gain should produce decreased emesis, better electrolyte status, and in general help correct a whole lot of what's wrong.
She walked all the way from the PT room to her room using only a cane. The therapist also started having Denise wear leg weights while walking (one pound yesterday, two pounds today). She's complaining of shin pains. Apparently cane walking uses some different muscles than walker walking, so the shin pain is normal.
We found out that the family of Denise's roommate goes to the same church we go to. Small world, but big church. Easy to miss people sometimes. We also moved Denise's bed against a wall instead of having it stick out into the room. That really helped open things up. They're letting Denise's bed rail stay down during the day so that she can start to get out of the bed & use the commode on her own soon. That right there will help Denise feel more in control of things. She also finished listening to the Lion, Witch & the Wardrobe today. We were given the whole series of Narnia audiobooks for Christmas, so she's going to start the next book in the series. A while back we tried watching the Lord of the Rings movies but gave up. Denise's vision is so poor that she really can't see a movie, even with a portable DVD player on her lap. So audiobooks have come to the rescue.
The following is kind of long. But I told Denise about it all and she wanted to make sure I jotted this down.
I "took a day off" today. Yesterday was the end our semester, so there were no students today. For Christmas gifts, Gracie & I were treated to annual passes to Disneyland. So we went for a couple hours this afternoon. It's been neat to go for just a couple hours here & there. Going with a young child makes the "dumb little kid rides" an incredible joy to go on now. Today we mostly limited our visit to Adventure/Frontier Land. There was a side trip to the teacup ride, where Gracie always wants to get the purple cup. It's Gracie's favorite cup for color, and one of my favorites for gear ration & higher RPMs. Anyhow... The first thing Gracie wanted to do was the Enchanted Tiki Room. She loved it until the walls started singing, and she got scared and wanted to leave when the thunder & lightning started. The jungle cruise skipper had me laughing so hard that I almost peed myself a couple times. I think his routine was the funniest I've ever heard on that ride (they get to make up some of their own material). On the raft to Tom Sawyer's Island, a mom asked me where we got Gracie's princess hat. It's one that Gracie got the first time she went to Disneyland, when a school family took us for her birthday. She's worn it every time since. Anyway, I guess that they don't have that style of hat anymore. The mom's little girl expressed some sadness about not being able to get a hat like Gracie's. Gracie told me to tell the other little girl that she could use her hat, if she promises to give it back before we go home. The mom thought that was pretty nice, but told Gracie that it's a big place and they might not be able to find us. It probably would've worked just fine, though, since Gracie and the little girl played together for a good hour or so inside the caves on Tom Sawyer's Island. The shooting gallery had her hooked for a long time. OK, me too. She met Jessie from the Toy Story movie. I forgot our camera, but asked another dad there to take a digital picture for us and email it. Hopefully that will happen, because that shot was a good one. Of all the other characters she met, I think the gal that played Ariel from Little Mermaid did the best job. You could just see that every little kid that met her felt like *they* were Ariel's favorite kid. I didn't see this happen to any of the other kids, but when Gracie was with Ariel, she pulled out a fork and asked Gracie if she'd ever had her hair combed with a "dinglehopper" before. Silent but smiling big, Gracie shook her head. Then the Little Mermaid started combing Gracie's hair with the fork. Family meals might never be the same.


Anonymous Anonymous said...

Phil and Denise,

It took me awhile after our trip back home, but we live in Oakhurst, CA. I finally got around to loading and and editing the pictures from Disneyland. I did a little touch up on your daughters picture. I hope you enjoy it.


February 07, 2006 7:48 PM  

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