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Tuesday, December 1

Whatever Julia was sick with last week has gotten to her mother. She's home sick from work today, feeling generally miserable with much coughing and so forth.

Thursday, December 3

Okay, now I've got it. I started feeling lousy last night, I slept poorly, and I've got the full-blown cold now. Coughing, sneezing, congestion. I'm home sick from with today. Sigh.

Saturday, December 5

Everyone's finally getting healthy again. This cold seems to linger a bit for a few days, but everyone is back to a normal activity schedule. Hopefull, this is what Julia had and she doesn't get sick again.

Today was Julia's first day with her new basketball league. It's a league of about 10 teams, and it's all girls in second through fifth grades. Today's session was a fundamentals training session, as most of the girls have never played before. There were drills in dribbling, passing, shooting, rebounding, and defense. They are so funny! Most of them have no clue what to do out there. There are a couple of girls who have obviously played before - I hope they teach the other girls.

Practice ran for over an hour, and Julia did a great job keeping up with the other girls. Her strength seems great, and her stamina isn't too bad either. Her dribbling is surprisingly good, especially with her left hand, despite the fact that she's right handed.

Today is also the day for Christmas parties. Both my company party and my wife's party are on the same night. We ended up going to both; her party was a drinks & appetizers gathering at a Boston restaurant, while mine was a buffet meal held at the Museum of Science in Boston (including free run of the museum displays and admission to the awesome Omni Theatre show Everest). We stayed overnight at a hotel right next to the museum. Julia stayed at her grandfather's house.

Sunday, December 6

First Sunday, Sacrament of the sick. It was interesting to drive back from Boston, pick up Julia, and get to church on time. It was different today - the church was being used by another group, so we all piled into the Reconcilliation room. This is a tiny room (maybe 10' X 10') where the priest will hear confessions. There had to be about 25 people in there! There was barely enough room to turn around. Despite (or perhaps because of) the crowding, it seemed more intimate. There seemed to be a few new faces receiving the sacrament, too. Father was just raving about it.

Thursday, December 10

Wart removal is going well. Another piece came off today. We have forgotten to apply the medicine a couple of times, we need to be more vigilant about it, or the progress we've made will stop.

Saturday, December 12

Another drop in Prednisone dose. First thing this morning was basketball practice, with simulated team play. I have a few things I need to teach her. We also took Julia to see the new movie Star Trek: Insurrection. She loved it, naturally.

We spent a good deal of time today working on our snail-mail Christmas cards and finishing the decorating around the house. Many of the people we sent cards to haven't heard about her JDMS, so a lot of time was spent writing brief notes of explanation, especially if her photo was included.

Current Drug Dose:

Prednisone: 7mg

Plaquenil: 200mg/day

Folic Acid: 1mg/day

Methotrexate: 22.5mg/week

Wednesday, December 16

One side effect (of many) of high-dose prednisone in kids is that they stop growing while they're on it. This has certainly happened to Julia. Before we started Prednisone therapy last March, Julia was one of the tallest kids in her class. She was taller than almost all the boys! That's no longer true. In the 9+ months since, she's grown perhaps half an inch. She's now quite average in height, and she's far from being the tallest any more.

For the first time in her life, she's actually wearing out clothes. This occurred to me a few days ago when I saw a tattered pair of her sneakers in the trash. It used to be that she'd get something new that fit her or was slightly big, she wore it a few times, then when she outgrew it, it went into one of two bins: the "sentimenal" bin, for special and hand-made clothes that we keep, and a "hand it on" bin, for friends show have girls that can make use of them. No more; little has gone into either bin (except her Halloween costume) for a long time.

This may be changing. It's hard to be objective here, but the signs are good. The "toxic dose" of prednisone, the dose above which we see the most side effects, is about 1mg per day per 10 pounds of body weight. With Julia weighing about 80 pounds, he cutoff dose is about 8mg, and she started at that dose 2 and a half weeks ago; she's now below that, at 7mg. Today, after dance, she complained that her ballet shows were too tight. They haven't been laundered, nor do we have any reason to think they shrunk. Another sign is one of the sweatshirts she wears to gym class in school. Today is also gym day, and this morning, she commented how the sleeves on it seem shorter. It may be that she's growing again.

Saturday, December 19

Julia's rash looked particularly bad today. We's all done with our Christmas stuff, so we went to an early movie, and then took a family outing into Boston. We rented a limousine for just the three of us. We ate at one of our favorite restaurants, then drove around the city looking a Christmas Lights, and finally went to a show. A wonderful time was had by all! Julia zonked out in the limo about 5 minutes after we started home.

Tuesday, December 22

Well, either more of Julia's clothes have shrunk, or she's growing. To finally test the theory, I measured her against the bathroom wall. She's nearly 50" tall now. That's at least half an inch taller than what she measured at her checkup last month, and we measured her at bedtime, which is when people are typically the shortest (due, I've read, to compression of the spine and other joints due to gravity. By the same token, people measure tallest first thing in the morning because those compressed areas tend to relax overnight). I'd have to say that her arms are getting longer at an even faster rate. Those sleeves are suddenly very short!

Wednesday, December 23

We noticed today that Julia's teeth seem to have taken on an odd white discoloration. I've read that fluoride (which she takes as a supplement) can discolor teeth, but that's supposed to be a brown discoloration. It must have come on suddenly, as her tooth brushing often needs to be checked and this is very noticable.

Friday, December 25

Merry Christmas, everyone. Julia's rash is looking especially bad today, but the white discoloration on her teeth seems to be better. That's a relief; if that fluctuates, then it's probably not permanent.

Saturday, December 26

Happy Boxing Day! Some of the families I've contacted through this Diary are from other countries, and some celebrate this holiday. I had heard of it, but I wasn't familiar with it. I learned a lot!

Prednisone goes down to 6mg today. The rash looks better, but the teeth look worse. Go figure. Julia and I both have been fighting a cold for a few days. We're laying low this weekend, renting some movies.

Current Drug Dose:

Prednisone: 6mg

Plaquenil: 200mg/day

Folic Acid: 1mg/day

Methotrexate: 22.5mg/week

Monday, December 28

I'm still not recovered from this cold, but Julia is feeling better, good enough to follow her normal routine. It seems that although the Prednisone suppresses her immune system and makes her more succeptable to getting sick, it also keeps things from becoming too serious.

Julia's teeth look okay today, as if there's nothing wrong with them.

Thursday, December 31

It's New Year's Eve, and Julia was determined to stay up until midnight. She slept much later than her usual, until after 8:00. We drove up to visit some friends during the day, and during the ride home, she slept for over an hour. I didn't make it - I was up at 4:30 coughing so I went to sleep before 11, and Julia's mom fell asleep watching TV with Julia. I'm told that Julia woke her up at midnight, they shared their "Happy New Year"s, and went to bed at 12:05.

I must say that Julia's rash has continued to look good throughout all this week. This is a very hopeful sign.

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