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Saturday, March 2

Julia and her mom have grandiose plans for this weekend, as I'm away on retreat. I heard ex post facto that some shopping was done, and some movies were watched.

Wednesday, March 6

Julia and I were horsing around and in her playroom tonight. At one point, she went to throw a foam ball at me and her hand hit mine. She jammed her middle finger pretty hard. It started swelling up immediately and after a couple of minutes she couldn't bend it. She said it hurt. We iced the affected knuckle and gave her an ibuprofen.

Thursday, March 7

Julia was upset this morning on finding her finger still swollen and that she couldn't bend it. She said it didn;t hurt that much, and to my untrained eye, the swelling didn't seem as bad as last night. She was upset mostly because she was worried that the injury would keep her out of gym class next Wednesday - it's the last week of gym class hockey, and her team is in the "finals".

By evening, her finger was a lot less swollen and she had partial movement in it. I definitely do not think it's broken.

Friday, March 8

Julia's crunched finger is a lot better. It doesn't hurt her at all, and she has about 90% of normal range of motion back.

Sunday, March 10

We went over to a friend's house this evening, and shortly before we left, Julia started to complain about a stomach ache. It got worse and worse, and by bedtime, all she could do was sit there and look miserable. We gave her a couple of Tums and had her lie still. She was tired and fell right to sleep, and didn't wake up during the night. Strange.

Monday, March 11

Julia woke up with just a hint of a stomach ache this morning, thank goodness, and it was gone by the end of the day. Don't know what caused that, but we're glad it's gone.

Saturday, March 16

Took Julia for her piano lesson, then for a quick trip into Boston for her monthly blood work. After we got home, we dashed out and went to see Lord of the Rings: Fellowship of the Ring again. What a fantastic movie! I think I liked it even more the second time.

Test Date Aldolase CK LDH AST ALT vW F8
6/2/01 4.8 88 186 23 15 106
7/7/01 5.1 115 211 33 35 147
8/4/01 4.2 90 218 25 12 123
9/1/01 4.6 80 194 24 16 105
10/8/01 3.5 81 197 22 12 123
11/3/01 6.1 120 232 23 14 92
12/15/01 5.1 92 218 22 12 94
1/19/02 5.3 102 198 21 12 193
2/16/02 5.0 202 230 24 11 100
3/16/02 5.5 101 200 21 14 126
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Wednesday, March 20

Happy first day of spring! In true New England fashion, we had a snowstorm today. We ended up getting about 4 inches of the heavy, wet variety, as the temperature hovered around the freezing mark all day. Yuck!

I picked Julia up at the end of the day, and she was complaining about congestion and sneezing at school all day. Hopefully, it's nothing, but she fell asleep on the sofa while watching TV, which never happens, so that's not a a good sign.

Thursday, March 21

Julia woke up feeling more congested and sluggish. She said she felt well enough to go to school, though, so I guess it's not too bad. We'll see how she gets through the day.

Dr. A.W. was out of town and didn't email us with the blood work numbers until this morning. Julia's labs from Saturday look great! Here are the raw numbers: CK 101, Aldolase 5.5, LDH 200, AST 21, ALT 14, vonWillibrand's factor 126, Sedimentation rate 9, White blood cell count 5.24, Hematocrit 36.7, Platelets 391.

These nubmers are all normal (last month's CK appears to indeed be an aberration), so Dr. A.W. says that it's fine to go ahead and stop taking the last prednisone pill!! That means that as of tomorrow, Julia is off of all JDMS medication. Woo hoo! First time in over 4 years!

Friday, March 22

Julia's first medically-sanctioned drug-free day went much like any other. I pulled all the 1mg Prednisone pills out of her 7-day pill dispenser, which now only holds vitamins and fluoride (we do not have fluoridated water in our town). Julia had a silly grin on her face as she emptied the remaining pills onto the table and silently noted the absence of anything anti-rheumatic.

We even had a little celebration of sorts this evening. After a Lent-friendly supper of pizza and salad with friends, we surprised Julia with a strawberry cheesecake (her favorite).

Thanks for all the congratulatory emails and postings about this everyone!

Current Drug Dose: Calcium: 900mg/day

Saturday, March 23

We took a trip to visit my parents, who are dealing with medical issues of their own, for a few hours. Afterwards, we went to our church's annual Seder supper. Julia has been to several of these, every year since she was about 3 or 4 years old. The Seder has become a part of our family's tradition as we celebrate Holy Week. This year's celebration was much like that in previous years. The ceremony is meaningful, the food is excellent, and the company is wonderful.

Julia had a wonderful experience this year. One of the activities after the meal is that all the children present have to search the room for the afikomen, a piece of the matzah that is broken during the ceremony. The child who finds it wins a prize; in this case, a half-pound solid chocolate cross. All the participating children received a bag of candy.

The Leader of the Seder made an announcement to the effect that Julia was at a large number of Seders and never found the afikomen. A girl sitting at the next table was the one who found it, and after being awarded the prize, she gave it to Julia! Julia was very touched by this act of generosity.

Thursday, March 28

This is Holy Thursday, the start of the Triduum, the three-day period leading up to the celebration of Easter. Julia has been studying Holy Week in her religion class this week, and she was clearly looking forward to it with a new appreciation for all the meaning behind the ceremony. Also, we have a new pastor in our church, and we were looking forward to seeing how he does things.

We went to church this evening, and one of the highlights of this mass is the ceremony of the washing of the feet. For those unfamiliar with it, this is when the priest washes the feet of parishioners, in rememberance of when Christ washed the feet of his disciples at the Last Supper. Julia decided that she wanted to get her feet washed for the first time. In past years, the pastor would select 12 people to get their feet washed, to represent the 12 disciples. We have a new pastor this year, and he has a different way of doing things. He invited anyone who wanted to to come up and get their feet washed. Julia was in the first group to go forward.

I have had my feet washed in this ceremony in the past. It is a very unusual feeling to have a priest wash one's feet, a strange combination of humbleness and joyfulness that defies description. I asked Julia what she felt, and she couldn't describe it either. We went home afterwards and had a snack, in anticipation of the fasting of Good Friday.

Friday, March 29

Day two of the Triduum, Good Friday. This is a "fast and abstinence" day for Catholics, meaning that we are supposed to eat no more than one full meal during the day, and no meat at all. I take it a bit more literally, and all I had all day was some bread blessed at Mass last night. Julia tried a full fast a few years ago, to bad results, and since she isn't required to adhere to this requirement, she takes a more modest approach. This is probably sensible, even though she's off of meds now (I just love saying that :-D).

Julia had the day off from school, and her mom took it off from work. They went shopping and also went to church to just sit quietly for a while to reflect. We all went to church in the evening, which is not technically a Mass since there is no consecration of eucharist performed. Unfotunately, some of the music seemed inappropriately festive and took away from the solemn, somber mood that should have prevailed. Still, it is a moving service, full of emotion and ceremony.

Saturday, March 30

We spent a mostly quiet day at home after taking care of a few errands, then prepared for the Holy Saturday Easter Vigil celebration. The weather was very favorable for the outdoor candle lighting ceremony - warmer than expected and windless. We moved indoors and enjoyed the grand ceremony that always accompanied this Mass. The readings are wonderful, and the moment when the lights are restored to the mostly dark church is very dramatic. There was a baptism tonight, which reminded us of the Easter Vigil when Julia was baptized and I was accepted into the church. Our priest gave a very moving homily, as he does each time he preaches.

Sunday, March 31

Happy Easter, everyone! Julia wanted to sing with the children's choir at this morning's 10:30 Mass, so off to church we went once again. She and the choir did a wonderful job, and the place was packed to the rafters. Afterwards, we had Easter dinner at our home with relatives and spent the rest of the day relaxing and eating too much.

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Updated April 3, 2002
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