Shelby's JDMS Journal of Events
March 2000 to present

Week 6

Sunday 4/9/00 : Today Shelby lounged around for quite awhile in the morning. Then it was time to say goodbye to Grandma and 2 Aunties. It was sure nice to have them here to help out, 6 extra pair of hands go a long way. Shelby's appetite was really strong today. She's hungry just an hour or so after eating a meal. For lunch she ate 1/2 chix salad sandwhich, a salad, 1/2 banana, 2 helpings of mashed potatoes and a glass of milk. Then we went to her brother's first soccer game, and within 1/2 hour of that starting, she was hungry already. She's craving salt, she wanted Cheetos. It's hard to explain to her why she can't have this stuff. I don't want her to start being weight conscious at age 8, I've heard too many horror stories about kids with eating disorders. She's put on a bit of weight through the middle already, so we'll have to be careful to keep up with the nutritious meals and snacks. We buy almost everything low-fat already, so that part won't be real hard. But we all like tortilla chips so that will be a hard habit to break. Even the low-fat chips aren't going to work...they are too salty. I suppose low-fat saltines would be an alternative. We were at the store today trying on shoes and Shelby had a little "spill". It was my fault, I felt horrible. She was standing up and I went to lift her foot off the ground to get her shoe off. She lost her balance and down she went. I need to get it through my head that her muscles can't react as fast as mine, and once she loses her balance she can't get it back like normal. I noticed some white spots on Shelby's inside lower lip today. She also has a little sore in the corner of her mouth.

Monday 4/10/00 : Shelby was a little upset at first this morning, when we told her we'd try a whole day at school. I think she was diggin' the 1/2 day thing. I'll pick her up after school so she doesn't have to struggle with the big bus steps. I'm afraid she might fall getting out. We are still crushing her calcium pills and even the prednisone. We mix it all together and give it to her in spooonfuls with liquids. It seems to be working fine. There is no way she'll be able to swallow the calcium pills. Today I picked Shelby up after school. She had PT at 4 so she came with me to work until then. She tripped once in the office but  managed to catch herself this time. She really drags her feet when she walks. After PT she played with a neighbor girl for awhile in her room. They listened to music and Shelby said she was teaching her how to dance. Cute stuff. She ate a good supper and then she kind of crashed on the couch. She complained of being cold (that's odd, she never used to be cold all the time but now she complains of that often) so she we gave her a blanket to cover up with. When shower time came around, she wasn't real excited about it. She broke down and cried for the first time since this whole thing started. Prior to this we've heard very little whining and almost no crying at all. Once she gets tired though there's no going back. I had to lift her into and out of the tub which is getting harder because she is so tall! The steri tape is still on her incision site...I can't believe how sticky that stuff is. She went to bed immediately after her bath.

Tuesday 4/11/00 : Shelby slept a little longer than normal today, which is fine because she still gets ready for school in plenty of time. She asked for help with getting dressed this morning. She gagged the medicine down but she's getting used to the routine. I told her before I dropped her off at school that if she needed anything or didn't feel well at school, to call me. She told me "Mom, I will do fine in school today". It's a relief to hear her thinking positive. I told her that I spoke to the mother of one of her classmates last night, and explained that the mom was asking about her and how she was doing. Shelby asked me what I said and I told her that she was getting better but that it would take some time. Shelby smiled and went on with whatever she was doing...she's figuring out this is no walk in the park but that it's not SO bad either. She's a creature of habit, and thrives when she's on a routine. If she expects something to take place (medicine, PT, etc), then she does fine with it.

Friday 4/14/00 : Had a busy few days. No time for a journal entry. I came down with a bit of a sore throat, etc. and spent a day at home Wednesday. Today we went to Omaha for Shelby's checkup. She also got her sitches out of her leg. That went fine and didn't hurt at all. They took some lab work at her appointment with Dr. J. He did some strength tests with her. When we asked how he felt she was doing he said her condition is very typical of JDMS and she's doing as well as expected. Her progress may seem slow, and we have a lot of work to do yet, but she is improving. I told him I felt the rash wasn't doing much better and in fact seemed to be spreading to other areas like her wrists and inside of her knees. He prescribed Plaquenil to help that along. The side effects include upset stomach and eye problems (rare). We will need to see an opthamologist next time we go to Omaha for eye tests. Dr. J. also noted that Shelby has thrush in her mouth, which is often caused by Prednisone. We have a prescription for lozenges to clear that up. Dr. J. was glad to hear Shelby's PT is going well, and was pleased that she'd started aquatic therapy as well. She really enjoys it, so we all feel it will be especially beneficial to her.

Saturday 4/15/00 : The weather was yucky today, so we were inside most of the day. Shelby spent some time playing with neighbor kids and made a necklace while she was there. Shelby had a problem today in the bathroom, as in, she couldn't go. We worked on it for quite awhile (about 45 minutes). We'll need to make sure she's drinking plenty of water and maybe even some prune juice if she can stomach it. Tonight we had friends over for supper. Shelby gagged on her food twice, she is having trouble swallowing. It seems to be worse at night, but she did mention that she had trouble at lunch, too. It takes her a long time to eat, and she's cutting her food into very tiny pieces. Shelby is good at keeping her medication on schedule. She usually finishes her breakfast and supper and then reminds us it's time for her medicine. We think this is good! It helps if all three of us are thinking about it.

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Page created 04/06/2000 last updated 06/19/2001.