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Monday, January 1

We didn't exactly get up early today, but we didn't sleep in either. We do have to go back to work/school tomorrow, so we didn't want to disrupt our sleep patterns too much. Even though it's not a holy day of obligation, we decided to get the year/century/millennium off to a good start and we went to mass today. It was very low key, very nice. We may have decided to make this a tradition.

We spent the rest of the day around the house cleaning up and doing other stuff we've been putting off since before Christmas.

Wednesday, January 3

Julia had her first grueling Wednesday of the year (gym class during school, and 2 hours of Dance after school). She was tired, but perked up considerably after eating some supper. She often seems to get tired and cranky when she hasn't eaten lately. It may be low blood sugar that saps her energy.

Thursday, January 4

I gave Julia first Methotrexate shot of the new year. It went uneventfully, as most do. The shot has become so routine for us. Is that good or bad? I can't decide.

Sunday, January 7

A busy day for a Sunday! Julia had choir practice, then sang a hymn verse solo during Mass. She did a very nice job, sang quite accurately and clearly. After Mass, we celebrated the Sacrament of the Sick. It was an unusually large group that gathered to celebrate. For the first time that we can remember, Julia was not the youngest parishioner in attendence - a couple brought their 9 week old baby who is having some problems.

After grabbing some lunch, we headed out to another JRA (Juvenile Rheumatoid Arthritis) support group pool party. As you may know, JDMS has such a small population that there are never enough cases in one area to maintain a support group, so our "official" local support is through our local JRA chapter. Several times a year, they have informational meetings with guest speakers, and also these parties. We've been to a few of them in the past, and Julia has always enjoyed them.

This one was held at HealthPoint, a nearby fitness center. This place is amazing. There is a huge exercise room with scores of pieces of exercise equipment - treadmills, exercise bikes, rowing machines, stairmasters, and the like. There's even a running track encircling this room. They also have an NBA-size basketball court (apparently where the Celtics practice), a weight room, a lap pool, and a heated theraputic pool. They also have a huge gym with stuff just for kids to do. I'll get to that in a minute.

We started out with time in the theraputic pool. Julia swam with a couple of girls with JRA that she'd met at previous parties. It was very fun and relaxing for most everyone. One girl with JRA was not having a good day. For some reason, she really affected me. She was obviously in a lot of pain, and I really felt sad that she couldn't participate.

One of the people who came to the party was none other than Dr. S.! He's the doctor for a lot of the kids who come to these parties, so I'm sure they appreciate seeing him in a non-hospital setting, as we did. He brought his (extremely polite) kids, who also had a great time splashing around in the pool.

After an hour in the pool, we headed to the kids' gym ("KidsPoint"). There's a climbing area, tumbling mats, basketball hoops set to about 9 feet, and other assorted equipment. We started out with some pizza, juice, and cookies, then headed out the the gym to play. It was a blast! I even played a little 1-on-1 with Dr. S. - he has some good moves and a decent outside shot.

Our time in the gym came to a close way too quickly. Julia looked great and had plenty of energy to swim and play. She also seems to be outgrowing more of her clothes - her gym suit was getting too short on her, too. This is a problem we are not going to complain about!

Tuesday, January 9

We headed in to Boston for another checkup this afternoon. Traffic and parking were particularly bad today - I had to drive from the bottom of the parking garage at Children's to the top and down again 3 times before I found a spot.

We didn't get to go for blood work over the weekend this time, so we got it done before our appointment. Despite using EMLA, Julia felt some pain this time. She said it happened when they pulled the needle out.

We did manage to leave early enough to get in on time. However, they were running late and we didn't get height and weight until almost half an hour late, and didn't see the doctor for almost an hour. Julia weighed in at 79.3 lb/ 36.0 kg, minus 2 pounds, despite the Holidays! Her height is 52.5" / 133.0 cm, almost an inch taller than 2 months ago. Her temperature (98.0°F / 36.6°C) and Blood pressure (125/59) were normal.

Dr. A.W. saw us and brought a 3rd year resident who was planning to become a general pediatrician and was doing a turn at Rheumatology. Dr. A.W. ran through the usual questions and physical exam, and said that Julia's rash looks better than in November - and this wasn't a great day for Julia's rash, she had some redness on her cheeks. She also commented how her knees look great, and her elbows, which have always been difficult, are improving. She explained to the resident about the Gottron's Sign on Julia's knuckles and the vascular activity evidenced byt the color of her eyelids.

She also tested Julia's strength and she said that even Julia's neck muscles, which were slightly weak 2 months age, are at or near full strength. This is very significant since those muscles are the first to be affected and the last to fully recover.

Julia's mom has been tracking a tiny growth on the back of Julia's left knee. It's been there about 6 weeks, and it hasn't changed all that much in that time. It's about a millimeter in diameter and is raised slightly. Dr. A.W. wasn't sure about it, so we'll ask Dr. S.

Dr. S. came in and brought with him a medical student and a digital camcorder. He explained that the student was taking her final exam, and part of the exam was to have give a patient a physical examination on videotape for critique and grading. He asked our permission, and after almost 3 years of visits by dozens of medical students, how could we say no? Besides, he promised that the tape would not be seen by anyone else, and I think the idea of being videotaped was pretty appealing to Julia.

The exam went very well and was quite thorough. The student apparently did not know that Julia had JDMS. At one point during the exam, the student was looking at Julia's elbows (still quite red and flaky) and asked her "Do you have eczema on your elbows?" Julia promptly replied "No, I have Juveline Dermatomyositis." It was quite a moment. So much for the student making the diagnosis! Later, Dr. S. congratulated Julia on her answer. Most of the way through the exam, Dr. S.'s camcorder battery died. Oh well. He said that once he figured out the technology, he'd burn a copy of the video onto a CD and give it to us next time we came in. Cool!

After the student was done, Dr. S. checked Julia out. He didn't think the bump on Julia's leg was anything to worry about - he said it looked "like a zit." Then we talked about what to do next. Dr. S. believes that the 3mg/day or Prednisone that Julia is taking should be having no side effects, and should be helping the Quinacrine fight her rash. He next wants to reduce Julia's MTX dose to the point where we can stop giving her injections and put her back on oral MTX. So, starting this Thursday, we will start giving Julia 22.5mg/week of MTX. We have pre-filled syringes of MTX with 25mg (1.0ml) in them, we will simply inject a partial dose (0.9ml, or 22.5mg) until we get pre-filled syringes with the correct dose. If all goes well, we'll be off of injections before summer! Julia was way happy to hear that.

Just as we were leaving, Dr. A.W. checked the computer and discovered that some of the results are already back. AST was 26, ALT 24, and LDH 197. Dr. S. seemed especially pleased by the LDH number, which has always been stubborn in Julia.

We spent over 3 hours with this visit! We grabbed our traditional soup and sandwich dinner at the restaurant in the hospital and then headed home.

Test Date Aldolase CK LDH AST ALT vW F8
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
1/9/01 9.8 78 197 26 24 101
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Thursday, January 11

We don't have any 22.5mg syringes of MTX yet, so we are using the 25m syringes and expressing 0.9ml instead of 1.0ml. This is trickier than it sounds, and the needle has to stay in Julia's arm longer than usual. Julia didn't like that much, but it went okay.

Current Drug Dose: Prednisone: 3mg/day Quinacrine: 100mg/day Folic Acid: 1mg/day Calcium: 900mg/day Methotrexate: 22.5mg/week

Friday, January 12

Dr. A.W. emailed us the blood work results, except for von Willebrand's factor, see above, and also WBC 7.46, Hematocrit 38.6, platelets 436, and sedimentation rate 8. She says that these all look great! Comparing to last time, everything is down except Aldolase, but it is still in the normal range, which is the important thing.

Wednesday, January 17

Dr. A.W. emailed us the von Willebrands factor result, and it's 101, which is excellent. They also arranged that our next shipment of Methotrexate should be at the new, reduced dose of 22.5mg (0.9 ml)

Saturday, January 20

Julia went with me as I went to donate blood again. Afterward, we were noticing what a *great* rash day Julia is having today. I mean, her face looks all but completely normal. Even her eyelids, which usually have prominent purplish heliotrope coloring, are all but normal - just the slightest coloration, which you wouldn't notice if you didn't know what to look for. It looks like smudges of eye shadow more than anything else. She still does have the rash on her knuckles, and her elbows are still the worst, but even these places are looking better.

Tuesday, January 23

We got a call on our answering machine yesterday telling us that our insurance provider (Julia's case manager) is dropping coverage for the company that delivers pre-measured and filled syringes of Methotrexate. I followed up with her on the phone today to find another provider. I gave her the name of number of Julia's doctors at Children's, since they are prescribing the MTX, since she had been trying to persue this with Julia's regular pediatrician. She promised to follow up if there were any problems.

She called back a couple of hours later. It turns out that the reason they are no longer supporting the old supplier is that they are going out of business - on Friday!! Ouch. We are due a shipment of MTX (at the new dose of 22.5mg (0.9ml)) next week, but the doomed company said that they will deliver it this week instead. I hope they don't mess it up, because it will be impossible to get any problems fixed before they close their doors.

Anyway, after this week, we have a new supplier. The case manager has already contacted them and made sure that they can perform the same service - pre-filled, measured doses of Methotrexate delivered to our house when someone can be here to accept delivery. They say they can, and they will pick up where the old company leaves off.

Since we're closing the book on the old supplier, I have to say that, after some initial problems, they have been excellent. They were always prompt with deliveries and the medicine was always in good shape (occasionally, there were small air bubbles in the syringes, but after telling them about it, this stopped immediately). The case worker there was very familiar with Julia and her case, and asked always about her with genuine interest, and even had recognized my voice the last time we spoke. Such service is rare these days, and we appreciate it - the new company definitely has a tough act to follow. Cheryl, if you're reading, thank you!

Wednesday, January 24

Julia had an excellent day today. She had a lot of energy and strength, and said that she did very well in Gym class, and also had a great dance rehersal. She even made sure that I would mention it here in the Diary.

Thursday, January 25

Julia woke up this morning with a sore throat. It was minor, but it may be a sign that she's getting sick.

During the day, Julia said her throat wasn't bothering her too much. After school, Julia was having stomach cramps, then she had several bouts of diarrhea. Nothing serious, but that always make you feel miserable. We gave her an anti-diarrhea pill at bedtime, and she did manage to sleep well through the night.

Monday, January 29

Julia was feeling up-and-down with her cold or flu or whatever it is all weekend, and today is no exception. It's not bad, certinlay not serious enough to stay home from school, but she's definitely not 100% either.

Wednesday, January 31

The new Methotrexate delivery comapny came today with a delivery of Julia's syringes at the new dose of 22.5mg. The delivered everything we needed and it was right on time. They called afterward to make sure that all is well. They also want us to set up an appointment with their nurse practitioner, which apparently they do for all their new patients.

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Updated February 5, 2001
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