Shelby's JDMS Journal of Events
March 2000 to present

Week 5

Monday 4/3/00 : Shelby is going to attend school 1/2 days this week. We give her the medicine in the morning with her breakfast. The school personnel are very willing to do anything to help Shelby be comfortable in school. Her voice is still very nasal. She still has trouble with steps, so they will use the wheelchair lift to get her up the steps for now. She can go down them on her own. Her classmates are glad to see her back in school - they missed her last week. Shelby wants to eat lunch at school, so I pick her up at 12:20 after lunch. She had a good day and has some homework to do later. She told Grandma that the other kids got to go see a play this afternoon but she didn't get to go. But then she said "...but that's alright. I'm here and I'm okay". Out of the mouths of babes. Shelby has a desk in her room now, so she buckles down right away and gets most of her homework done. We get the calcium pills today. They are huge and hard as a rock. We use a pill cutter and grinder to make them into powder. How do they expect kids to swallow these things? I don't think I could even swallow them.   Shelby has PT at 3:00 today. The worked with her for an hour. She was pretty tired when she got done but she said she liked it (she likes the therapist, too). Shelby's rash is getting a little bit worse on her hands again. 2x per day on the creme. We forgot this morning. No nap again today, but bedtime around 8:30.

Tuesday 4/4/00 :  Medicine, skin cream, school this morning. Still feeling pretty good, and we're noticing an appetite increase. Shelby will probably find those 5 pounds she lost last week, and maybe more. We will continue to be careful about what we buy for snacks for her. She loves fresh fruit and veggies. Maybe Mom and Dad will lose a few pounds in the process? Brother Sheridan is doing fine. He's got soccer practice tonight and loves it. Shelby was going to try soccer this year, maybe next year she'll be able to play.  Sheridan has been helpful in helping Shelby with seat belts and door handles. We haven't explained to him in depth what is going on yet. I did tell him that Shelby's muscles weren't working real good right now so she might need some help from all of us. He's very willing to do that much, but was a little jealous about all the goodies she was given while she was in the hospital. Grandma plans to take him to Wal-Mart to get some of his own goodies. Shelby's sweet personality is shining through more now that she's home and feeling better. In fact, she's become a giggle-box. Laughter is wonderful medicine, for all of us.

Wednesday 4/5/00 : We're slipping into our routine, but the only problem is that the routine won't include Grandma after this week. It's going to be quite an adjustment to lose her extra pair of experienced hands around the house. She's been helpful in cleaning the new house, unboxing and putting away things, grocery shopping, cooking, and painting. Again, I wonder what it would have been like to have no help?! And for Shelby, Grandma's presence has been priceless. Shelby has PT again today. I think she looks forward to it and enjoys it, for that I am thankful. After PT she is pretty tired and struggles with the steps. She laid on her bed and rested for awhile late this afternoon. Tomorrow my sisters taking the 5 1/2 hour road trip down here to paint the inside of our new house. Aren't sisters a treasure? They are anxious to see the kids as well. We are looking forward to having them here.

Thursday 4/6/00 : More of the same this morning. Shelby has been feeling pretty good in the mornings and looks forward to school. Her classmates continue to be supportive of her, waiting for her to get up the steps in the lift. She hasn't been going out for recess or to PE class this week. Dr. J. said to hold off on that until after her check up. We'll have to apply sunscreen to her skin, too, as the medication makes her sensitive to sunlight. Grandma picked Shelby up from school today. When I got home from work, my sisters were there. Shelby seems to be slowing down a bit. I'm glad we only have her at school half time. We might have to consider doing that next week, too. Her attitude is still great. Her voice is returning back to normal. The nasal quality is getting a lot less noticeable. She hasn't griped too much about taking the medicine. I suppose it will just become normal after awhile. 

Friday 4/7/99 : Shelby is tired this morning, and it shows on her face. I considered keeping her home today but she said she wanted to go to school. I hope she will nap this afternoon when we get home at 12:30. I still marvel at how well she is adjusting to all of these changes in her life. She is still fairly independent, but does need help with certain tasks. She had PT today and she was pretty tired, just after 1/2 hour. The kids went out for pizza with Grandma, though, so she perked up enough for that! The rash on her hands isn't improving any more, in fact, new scabs are showing up on several fingers. I don't think the cream works on her hands, maybe because of handwashing? I will think to ask the doctor about that. Also I'm wondering about applying sunscreen. Does that have to be applied before or after the cream? Bedtime around 9 tonight.

Saturday 4/8/00 : We all had a big day today. My sisters and I did a lot of painting, and Shelby helped out a lot. She was our "runner", making sure we had clean up rags, screwdrivers, or whatever else we needed during the day. She even got to paint a little bit herself, which she seemed to enjoy more than the rest of us. Shelby found her new favorite chore...using the "Swifter". She's designated that as her job and loves to push it around to clean the floors. We stretched her muscles before bed, she was a little stiff but seemed to feel good overall.

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