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Saturday, September 2
Julia and her mom took a ride into Boston to get her lab tests done in anticipation of next week's clinic appointment. Our hope is that most or all the results will be available so we can make a decision about what to do next more quickly.
This is Labor Day weekend, the weekend when thousands of college students move into Boston for the school year. Unfortunately, the ride into Boston turned out to be pretty nightmarish. Traffic on the highway leading in to town was backed up, and the roads near Children's Hospital were clogged with rented trucks and cars unloading the students' posessions. Despite the difficult ride, the visit to Children's itself was uneventful, and they found their way out of the city with a lot less hassle.
Sunday, September 3
We celebrated our first Sacrament of the Sick since June today. We usually go back for a private blessing during the summer months when the community celebration is suspended. We either were too busy or forgot this summer. It was wonderful, as usual, with a mix of familar and new faces attending.
Julia's cheeks were looking a little flushed today, so much so that someone at church asked her if it was eczema. She also had a long stretch of sluggishness in the afternoon today, but it could just be the lack of sleep in the summer schedule catching up to her.
Tuesday, September 5
We had a visit to Children's Hospital today, our first in 3 months. For a change, we didn't have to draw blood before our appointment because we came in for that on Saturday. Julia's weight is up a couple of pounds (83), but she's also a bit taller (1/2" taller, to 52"). Her temperature and blood pressure were normal.
We saw Dr. A.W. first. She had a busy summer taking an intensive course. She said it was grueling, but very rewarding. We chatted back and forth about what we did this summer. She also immediately commented on how good Julia looked - despite her rash kicking up a bit the past few days, it's really looking a lot better. We also talked about the Thrush that Julia had over the summer. She looking in Julia's mouth and said there may be a little bit more in there again. Sigh.
Dr. A.W. also looked at Julia's hands - her cuticles are looking great, her knuckles are barely red, and the tiny bits of calcinosis we saw the last couple of times we were in are completely gone. She then ran through the usual physical exam, testing Julia's strength and so on. Everything seemed normal to her, which is of course good.
After she was done, she went and came back with Dr. S. and a medical student. It almost doesn't seen normal if there isn't a med student in there to observe. Dr. S. walked through the diagnostic symptoms on Julia - her nailbed capillaries, the knuckles, the heliotrope rash that's still visible on her eyelids. He asked if she knew why Julia's skin was yellow - she didn't, but with a little push, she figured it was a drug side effect.
As Dr. S. was testing Julia's strength in her neck, he said that her strength was excellent, but "not what it will be eventually". I guess that means he doesn't think her neck muscles are 100% yet. He did say everything else was good, strength-wise.
He had a look in Julia's mouth and confirmed that there was a tiny bit of what is probably Thrush in there. He said that she may have picked it up from a shared cup or water bottle, and once the fungus gets in there, kids on Prednisone sometimes have a tough time getting rid of it. We need to keep an eye on it and if it gets worse, we will have to go back on the Nystatin.
Dr. A.W. brought in a sheet with most of the lab results from Saturday, and we spent a good deal of time talking about them. The numbers are in the chart above, and they are excellent. Everything is in the normal range, and the AST and ALT which were on the border last time had both gone down. The von Willebrands test was a 98, the best we've ever seen. The Alsolase was still not in, but we're assuming it's going to be okay. We will be going down to 6mg of Prednisone starting tomorrow, and we'll get tested again in a month. Woo Hoo!
Wednesday, September 6
Today is Julia's first day of 4th grade. She doesn't find out who her teacher is or who her classmates are until moments before school begins and they announce it. She happened to get the teacher she preferred, and nearly all her best friends from previous years are in her class. It worked out great! At the end of the day, she said "I love school!" After her spending most of the past week in a state of dread at summer vacation ending, it was wonderful to hear this.
Today was also Julia's first day of dance classes. The first day is always filled with administrative stuff, but they got a fair amount of dancing in, and Julia did very well. She's in a bit of agony over whether she wants to dance in the extra recital in November; tryouts are Sunday, and she has to decide by the middle of next week.
Dr. A.W. emailed us the Alsolase result, which came in this morning. It was 7.2, which is completely normal. Great news!
|Current Drug Dose:
||Folic Acid: 1mg/day
Saturday, September 9
Tonight, we went to an ice show, "Evening On Ice". Julia's mom scored 4 free tickets from her work (the tickets were $25 each!), so Julia invited a friend from school. Her friend happened to be a skater and enjoyed the show a lot.
The show was a charity event for a local chapter of the United Way. There were local skaters, plenty of kids, so that parts of it reminded us of a dance recital, only faster. They also had several olympic skaters and couples, and some of them were fantastic (to this untrained eye). It was really a teriffic show, and we had a very nice time.
Sunday, September 10
We were sitting down to dinner tonight, out at our local favorite chinese restaurant. We go in there maybe 4 or 5 times a year, and we haven't been in for several months. The owner stopped me and asked if Julia had gotten her haircut, and she also noted that the rash on Julia's face seemed to be gone. She asked what it was, and I gave the quick explanation of JDMS, and explained that Julia is doing much better the past several months. It was very gratifying to hear that link of comment about Julia's rash.
We took a close look, and sure enough we noticed Julia's eyelids. They have somehow dramatically improved in the past several weeks - the rash there is almost gone. If you didn't know to look for it, you wouldn't notice it at all. She skin overall is still very yellow, especially in the middle of the day, but we definitely think it's a good tradeoff for how good the rash looks.
Friday, September 15
Julia came home from school with a bit of a cough, and when she lay down to sleep, she couldn't stop coughing. Thought it might be Thrush again, but it doesn't look too bad in there. We finally gave her a cough pill and a drink of water and she settled down after a few more minutes of coughing.
Saturday, September 16
This afternoon, there are another meeting of the local Myositis support group. Julia couldn't come because of dance rehersal, so I went alone. We listened to a speaker, a nutritionist who talked about eating healthy food and dealing with Prednisone side effects. Unfortunately, she was not well versed in the effects of Prednisone on kids. She made a comment about "growing kids," which they are not when they're on significant doses of Prednsone. Most of her comments, however, made good sense and reinforced what most people already knew, I think.
The rest of the meeting, before and after the speaker, we just general sharing among everyone there. There was a little of everything there - several PM, a couple of cases of IBM, a newly dx'd case of DM, and a woman who had JDMS as a child in the 70's. It was very interesting, as always. Unfortunately, the couple that has been organizing these meetings is moving to Florida next year. I hope someone can keep them going.
Julia's cough seemed better, but she still needed a cough pill at bedtime. This may hang on for a few days yet.
Sunday, September 17
Today, Julia rode her two-wheeler solo for the first time!!! The past 3 years have been tough - she's never had the strength to pedal a bike herself before, but she's really, really wanted to ride a bike like all her friends do. This afternoon, I was mowing the lawn, and mom called me over to see - Julia was halfway down the street, pedaling away like crazy. A good day, indeed.
Julia was fine all day and hardly coughed at all, but as soon as she lay down to sleep, the cough started again.
Monday, September 18
Julia took a cough pill at bedtime, but she didn't cough much when she lay down. I think it's getting better. At least she doesn't have any other symptoms.
Tuesday, September 19
Julia managed to get to sleep tonight without a cough pill and without coughing. Phew!
Tuesday, September 26
First time for everything. Today, for the first time as far as I can recall, Julia forgot to take her meds. She was running late getting out the door on time, and she asked if it was okay to take her meds at day care instead of at home. I said okay, but don't forget to bring your dose along with you. She forgot, and we didn't even realize it until Wednesday morning when her Tuesday dose was still sitting there.
I checked and for Prednisone, if you miss a dose, you just skip it. Hopefully, her dose is low enough (6mg/day) that it won't be a problem.
Wednesday, September 27
I heard from several people that missing a dose is not a big deal for anything Julia is taking. It apparently happens all the time. Julia has certainly not shown any ill effects from it.
We're back into Wednesdays being tough for Julia. She has gym during school, then 2 hours of dance class after school, plus homework. She's always exhausted at the end of the day.
Friday, September 29
Julia got her picture taken for dance today. I hope she doesn't look too yellow in it!
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