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Friday, February 1

This is the last day of Catholic Schools Week, and Julia's class has been give the assignment to teach class for the day! Everyone had to prepare a few minutes' worth of material. Julia did a brief lecture on Alaska, then gave the rest of the class a quiz on the material she covered. She said her teaching received good reviews.

Sunday, February 3

Julia started the morning wiht choir practice, singing a solo at Mass, and then receiving the Sacrament of the Sick. We had a nice lunch out, then settled in to do some chores around the house.

As most people know, it's Super Bowl Sunday, and our New England Patriots are playing in the big game. Coming into the game, the St. Louis Rams were heavily favored (14 point betting line) and practically no one was giving the Pats any chance.

We were at the same place as the last two weekends to watch the game, and what a game!! It was a very exciting game to watch, with the Patriots' defense doing an outstanding job. It came down to a tied-game field goal attempt with 7 seconds left. The Pats scored as time expired and won the game! It was pandemonium, and a tremendously satisfying victory to see our Patriots win their first championship ever.

Monday, February 4

We finally got the last of the results back from last month's blood work from Dr. A.W. It seems that Julia's vonWillibrand's factor was 193, slightly above normal. She said that with everything else completely normal and her feeling so well, that we don't have a problem because we lowered Julia's prednisone. She said that at such low doses, the change of 1 mg does not make a significant difference in treatment effect.

She also said thatthe reason we go so slowly at this point is not because we are concerned that a 1 mg change will flare JDMS, but rather because tapering quickly might make her ill if her adrenal glands are not making enough steroid on their own. This is comforting - we don't want to worry about inducing a flare at this stage of the game.

Friday, February 15

Julia's 11th birthday is this Sunday, so we decided she could have her birthday party this weekend. She wanted to have a sleepover and invite a few of her best friends. One couldn't make it, so Julia and 3 girls had a little party.

It was pizza, birthday cake, and ice cream for supper, the Julia opened her gifts (hint: books, books, and more books!). Then on to the theme: Game Show! Julia's mom and I dressed up in our Game How Host finest and acted as emcees. It was just goofy fun, and our primary job was to try to distribure the prizes (candy, necklaces, toys) as equitably as possible. The kids seemed to love it.

After the games, the girls settled in to watch a movie (Shrek) on DVD. They only got a half an hour or so into it before they all got tired and went to sleep!

Saturday, February 16

The girls awoke and we fixed them all french toast for breakfast. Then it was much running around and screaming until the girls' parents came to take them home.

We dropped one girl off on our way out, because I took Julia into Boston for blood work today. It went very smoothly, and we had lunch in the hospital cafeteria, which continues to be highly recommended (good food, good selection, inexpensive, and pleasant surroudings).

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
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Sunday, February 17

Happy 11th Birthday, Julia!! We actually had a quite laid-back and low-key day for Julia. We took her out to lunch at her favorite restaurant, Bugaboo Creek, and then we hung out at home with lots to do around the house.

Monday, February 18

Happy President's Day, US readers. Julia and her mom had the day off, while I had to work. They went shopping and just hung out together. Not everything went as they planned, but a bad day off beats a good day at work every time, I say!

We got email from Dr. A.W. with most of Julia's lab results. They are: Aldolase 5.0, LDH 230, AST 24, ALT 11, CK 202, white blood cells 7.32, hematocrit 36.8, platelets 417, and sedimentation rate 7. The only iffy number is CK, which at 202 is higher than it's been for a long time. Dr. A.W. reminded us that increased activity can elevate this number, and sure enough, Julia's birthday party involved much said activity. She also said we're still waiting on von Willebrands, as usual, and we'll make a decision on lowering Prednisone after we get that back.

Saturday, February 23

We went shopping today and picked up Julia a new pair of blue jeans. Her old pair had worn a hole through at the knee, which she thought was "cool", but at which her parents were appalled.

What is notable is that her new jeans did not need a stretch waist, which she has been wearing almost exclusively since she started taking Prednisone. I guess that little by little, her shape has been returning to normal.

Monday, February 25

Dr. A.W. emailed us this afternoon, and Julia's von Willebrand's was 100, so this looks great! She says we can go ahead and taper down to 1mg daily on the prednisone, and we'll see what the labs look like in a few weeks. Woo Hoo!

She also talked about the whole issue about having the Endocrinology department see Julia. They would be the ones to determine if she needs formal testing to see whether her system has started to make corticosteroids again. She seems to think it would be a good idea to have her seen in their clinic perhaps sometime in April, because if things continue to go on schedule, Julia will be off prednisone for a few weeks by then. It sounds like a plan.

Julia also came home from school today with a tooth. She pulled it out during Math class. It's a baby molar. I think she has three more of these to get rid of before all the baby teeth are gone.

Tuesday, February 26

Julia came home from school with *another* tooth today! She said that this one is wasn't loose at all yesterday, but it was right next to the one she lost yesterday, so she worked on it and popped it out. Two down, two to go...

No sign of any change in Julia for taking a lowered dose of Prednisone this morning. She had a ton of homework, and was not in a happy mood about that, but she wasn't tired or anything like that.

Current Drug Dose: Prednisone: 1mg/day Calcium: 900mg/day

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Updated February 27, 2002
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