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Wednesday, November 1

Well, Julia was up late last night trick-or-treating, then had her usual brutal Wednesday - an hour of Gym during the day and 2 hours of dance after school. Put that all together and she was utterly exhausted before bedtime. She was crying at the slightest provocation, which is always a sign of her being tired. She actually didn't put up a fight at being put to bed early.

Thursday, November 2

In case anyone is wondering, Julia is still getting a Methotrexate injection (25mg, subcutaneous) at home each Thursday morning. They have been going very smoothly lately. Knock wood.

Saturday, November 4

We were noticing that Julia's rash has not seemed to get any better in the past several weeks. Her eyelids are still purplish, and her knuckles and elbows are also reddish.

We took a quick trip into Boston for blood work. The results are below.

Test Date Aldolase CK LDH AST ALT vW F8
11/16/99 8.3 113 273 30 27 195
12/14/99 6.3 88 249 24 21 135
1/18/00 6.5 72 247 23 20 168
2/29/00 6.0 74 230 24 32 190
3/18/00 5.2 54 213 25 25 148
4/18/00 3.7 50 190 22 13 145
6/6/00 5.6 67 204 23 21 148
7/8/00 6.0 72 248 28 25 170
8/5/00 70.4 77 219 33 32 137
9/2/00 7.2 77 227 27 26 98
10/7/00 6.2 80 201 23 22 133
11/4/00 5.0 83 213 30 27 137
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Sunday, November 5

Julia has joined the children's choir at our church, and today was their first performance during the 10:30 mass. She did a nice job, and the choir sounded pretty good. Now, if we could get her to just stand still up there...

Julia also received the monthly Scarament of the Sick today after mass. Today's celebration was very well attended, and Julia was the only shild there, as usual.

Tuesday, November 7

I picked up Julia at school and we headed on into Boston for a checkup at Children's. The waiting room was a zoo, and it was obvious they were running late. Our 3:30 appointment didn't start until well after 4:00.

We started with Julia getting her influenza shot. I'd emailed Dr. A.W. a few weeks ago and asked if she could get her shot today, and they were ready. They'd only gotten their supply of shots a couple of weeks ago. Apparently, the new stories of shortages and late deliveries are true. Anyway, the nurse said it might cause her some pain, but we could give her Tylenol in that case.

Next, vital stats: Julia weighed 81 pounds, about a pound less than last time. She's also about 1cm taller, at 132.5cm. Her temperature (98.0°) and blood pressure (127/66) were normal.

After a bit more waiting, Dr. A.W. came in with a medical student (we found out that Julia was her first patient!) and most of the results from Saturday's labs (all except von Willebrand factor). They're all in the normal range, and that's a good thing.

Dr. A.W. asked about the MAA Conference, and we talked about meeting and listening to Dr. Rider, among other things. We then shifted to talking about the ACR Scientific Meeting in Philadelphia. Dr. A.W. and Dr. S. both attended at least part of the time. She said that there was a lot of interest in Dermatomyositis, in contrast to earlier years.

We then talked about how Julia is doing. We mentioned that her rash is not looking bad, but it's not really been improving in the past several weeks. We did say that her strength and stamina has been very good. She ran through the usual tests and said that Julia's neck muscles, the last ones that still showed weakness, were markedly improved since last visit.

We then mentioned the thing about Julia's fingernails glowing green (think Indiglo) under a black light. They seemed a bit incredulous. I mentioned that I thought it might be a side effect of the Quinacrine (Atabrine), but they'd never heard of it.

We also paid close attention to the bumps on Julia's hands. They want to know if they are signs of Calcinosis. We talked quite a bit about calcinosis. but they weren't sure if the bumps on Julia's palms were that or somethig else. They said they may ask one of the dermatologists to have a look. They then left us for a while.

While we were waiting, Julia started complaining that her arm, the one with the flu shot, was hurting. I went and found a nurse, and she gave us a Tylenol to give to Julia. She was thrilled to be able to take "hospital medicine." Once it took effect, she was feeling a lot better.

They came back with Dr. S and a couple of other medical students. They ran through the same tests and information for him. We asked him about his presentation at the ACR Conference. He said there was a lot of interest in his study and another treatment study that was presented. Julia is one of the subjects of Dr. S.'s study, one of only 5 out of 38 JDMS patients (over 10 years) at Children's that developed Calcinosis.

We asked Dr. S. about Prednisone preventing baby teeth from falling out. He said that if anything, it should have the opposite effect. However, the JDMS disease process itself may have that effect.

After all the exams, we decided that if the von Willebrands test comes back normal, we'll reduce Prednisone by 1mg to 4. If we don't have any problems, we'll reduce it again in a month to 3mg, without lab tests, and then retest a month after that. Cool!

Then, the dermatologists started getting into the act. Dr. L. came came in and spent a long time examining Julia's hands. She couldn't decide what the bumps on Julia's hands were. They seemed too small to be Calcinosis, and they also seemed not to be Gout (uric acid crystal deposits). We talked about the bumps that we'd seen earlier - they were bigger and had solid bumps that could definitely be felt that are not there now. They talked about taking a biopsy - Julia's eyes got really big when she heard that, probably because she'd heard that a biopsy can be painful. (If they were going to take one here, it would simply have been a scraping, with little or no pain).

Dr. L. left and came back with Dr. S.G., who Julia had seen the very first day we were at Children's in 1998. The first thing he said was "is this the girl with the web site?" Yup, that's her. He'd also seen her several months ago to look at her rash, and at that time her prescribed some creams that didn't do anything. He did say that her rash looked a lot better than when he'd seen her last time. The two of them looked and looked some more and finally decided that the bumps on Julia's hands were nothing to be concerned about and they didn't want a biopsy after all.

The last thing that happened was Dr. L. came back with a UV (black light) lamp to look at Julia's glowing fingernails. They killed the room lights and sure enough, Julia's fingernails were all aglow. It's actually a very cool effect! It was almost comical, with 6 or 7 doctors and 2 parents crowded around Julia to get a look at her green fingernails glowing. Her knuckles and elbows were also glowing a bit, but not as much as those fingernails. There was some mention of writing a paper on the subject, but Dr. L. came back in a few minutes with a book that said that the fingernail "coloration" was a known side effect of Atabrine. Everyone was a little disappointed to see that, I think.

As you might guess, we spend a long time at Children's for a "routine" visit. We grabbed some sandwiches at the Au Bon Pain that's right in the Children's building and headed out just before 6:00. Traffic was terrible until we were well outside the city, making for an even longer day.

One final thing: right at bedtime, Julia lost a tooth! She said she's been wiggling it with her tongue all the way home, and it was very loose. Finally, it was just hanging by a flap of gum tissue, and she took a piece of gauze, grabbed it, and yanked it out. The tooth fairy left her a Beanie Baby.

Wednesday, November 8

Current Drug Dose: Prednisone: 4mg/day Quinacrine: 100mg/day Folic Acid: 1mg/day Calcium: 900mg/day Methotrexate: 25mg/week

Saturday, November 11

This is Veteran's Day, a day when we remember all Americans who served in the armed forces, especially those who gave their lives. Say "Thank You" to a veteran today if you see one.

Today, Julia had a "technical rehersal" in perparation for her big holiday dance show next weekend. This was an all-afternoon affair, with her having to be there from 12:30 until 6:00. This is where they walked through the numbers in the show and decide who has to be where when, how the light and sound will work, and other similar logistics. It was a long afternoon for Julia, and she was rightly exhaused at the end of it.

Tuesday, November 14

This was an ugly day for me. I got into a pretty serious car accident this morning on the way to work. I was making a lane change, and someone else had the same idea and hit my left rear bumper. This caused me to lose control and I crashed nearly head-on into a Jersey barrier. The other driver never stopped. It was very frightening to be out of control on a highway going 65 miles per hour - I remember thinking that I hoped no one else would plow into me. Luckily, they didn't.

I was unhurt, but my car was not so lucky. It was bleeding radiator fluid all over the place and had to be towed away. I really, really like(d) my car. I hope they can salvage it. Anyway, the State Police was on the scene in just a couple of minutes, and the trooper who handled the investigation was extremely courteous, efficient, and understanding. It was a mess of a day, dealing with rental cars, insurance, AAA, and more.

Friday, November 17

Julia had dress rehersal for her dance show this weekend. Full battle gear is required - french braids, all costumes, everything. It should be just a run-through, but there's always corrections being made. Julia's mom volunteered to work the backstage crew, so she was there for the whole four-and-a-half hour ordeal.

Julia is also telling us that another of her teeth is getting looser. I can't but think that this is another good sign, that she's growing again.

Saturday, November 18

The second annual Broadway Youth Dance Theatre Holiday Spectacular, first show, took place tonight. It's all dance to holiday numbers. The costumes were stunning, the quality of the dance was very high, the choreography was excellent, and the entertainment value of the show was great!! This really was an outstanding show. Julia looked great up there, too.

Sunday, November 19

The second and final show of the Holiday Spectacular was this afternoon, and if anything, the show was better than last night's. The dancers didn't seem as tired, and the audience was definitely more into it, finishing with a standing ovation. We had several family members in the audiance, and they all loved it, too - and some of they are hard to please!

Monday, November 20

Today was Julia's last day of school before Thanksgiving break. She got her report card (outstanding!!), and as a bonus, she lost her loose tooth during school. The school nurse has tiny plastic treasure chests just for this purpose.

Tuesday, November 21

This morning, the three of us hopped on the MBTA Commuter Rail and headed into Boston. Julia is just beginning to study rocks and minerals in school, and she wanted to get a head start. Good for her! Her idea was to go to a museum and see some rocks and minerals firsthand.

We went to the Peabody Museum of Archeology and Ethnology. We only had the morning because of some commitments in the afternoon, but we had a great time! We saw a very extensive display of Native American artifacts and some diaramas depicting their daily life. After that, we found the Meterorite room. There were some fascinating pieces there, but the best part was when the curator of the mineral display stopped in and gave us some special explanations.

He opened some drawers and let Julia hold some slices of meteorites that they were going to put on display. He also pointed out very cool meteorites, including one that had struck a car. The museum has a piece of that meteorite, and many others.

The curator also opened some locked cabinets and let us handle some other pieces. He let Julia hold several minerals that are indigenous to Massachusetts and other New England states, and told us some stories about some of the pieces on exhibit. He was very generous with his time, and it was very much the highlight of the visit. I also not that Julia was taking notes on some of the more interestin pieces, perhaps to use in school next week.

After that, we perused more of the minerals, and then visited the collection of glass flowers. This is a room full of incredible detailed replicas of various species of plants and flowers - all in glass! Many of these look utterly real, like the flora they represent. This is an unbelievable display - not to be missed if you're in the area.

Finally, we saw the displays of insects and birds. There are literally hundreds of species of each, all beautifuly arranged and displayed. We recognized several birds that we see on our bird feeders. Julia also checked out the display of fossils. It was a very nice trip to the museum indeed.

Thursday, November 23

Happy Thanksgiving Day to all those in the U.S. This was a day of eating too much, sitting around the house too much, and watching too much television. Perfect!

Sunday, November 26

Julia is singing in the Children's choir at church, and she's also signed up to be in the Christmas Eve show. She wanted to be Mary, but they recruited a couple from the parish for the role of the Holy couple. Instead, she will be one of a number of readers, each of whom have several lines to read - from memory. I have no doubt Julia will learn her lines in short order.

Wednesday, November 29

Julia has a particularly grueling day today. She didn't sleep well last night, then she had gym during school and a 2 hour dance rehersal. Also, because of the Thenksgiving recess from school, several of her teachers decided to have tests tomorrow. That leaves her with a lot of extra studying in addition to the usual load of homework. She was really exhausted and grumpy by bedtime.

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Updated December 7, 2000
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