Back to October
Forward to December
Monday November 1
Julia was feeling a little down today because of a bit of a cold. A little congestion and runny nose, and a bit of a cough. The cough got worse at the end of the day, however, and she had a tough time falling asleep.
Tuesday November 2
Julia we feeling worse this morning from the cold, and we all decided she should stay home from school. She'll read, watch TV, and play with her Pokémon cards. I still largely don't get the whole Pokémon phenomenon. Especially with Julia - she went from not caring about it to being a Pokémon fiend literally overnight.
She seemed to feel better as the day progressed, and was pretty close to normal by the end of the day. After doing over an hour of homework, she even jumped on a Dermatomyositis chat that we sometimes visit. She did have a little trouble falling alseep, though; she got a cough as soon as she lay down.
Wednesday November 3
Julia felt pretty good this morning and decided to go to school. She was scheduled for gym today, and dressed for it, but she wasn't feeling up to it, and sat out the second half. She also skipped dance class today after school and took it easy again.
We got email today from Dr. A.W., who gave us Julia's remaining results from last week's blood work. Julia's Aldolase remains steady at 7.5, but her von Willebrand factor test was up slightly, from 157 to 164 (the normal range is up to 160). They said that given how well she's doing clinically, and how good the rest of her numbers are especially after she was coming off a virus, they said to go ahead and reduce her oral Prednisone dose to 10mg/day.
However, they don't know about her current cold situation. I replied to her email and asked if they still thought it was okay to reduce the Prednisone even though she's sick, or would it be a good idea to stay at the higher dose for a while. We'll leave her at 12.5mg/day until we hear back.
Thursday November 4
After last week's good success with a morning Methotrexate shot, Julia decided that we'd be doing them then all the time. I must say, whether the effect is psychological or whatever, it seems to be working. If anything, this week's shot went better than last weeks, which went very well indeed.
Dr. A.W. called this evening. We had a long discussion about whether we should reduce Julia's Prednisone dose immediately, or wait a few days. We ended up with a consensus that we would wait until Monday to reduce her dose. She said that waiting the few days was being ultra-conservative, but it wouldn't hurt, we're not under any pressure to get Julia off of oral Prednisone on a schedule, and it wouldn't affect things if we decide to reduce her dose again at her next infusion/visit. We talked about how we thought we were too aggressive tapering her last spring, and maybe that contributed to her flare-up. We really don't want that to happen again.
She emphasized that we are the best judges of her condition, and it would be okay with her and Dr.S. if we changed the dose any time between now and Monday. If we thought Julia was 100% over her cold tomorrow or over the weekend, it'd be fine if we changed her dose then. I think we'll keep Monday as the target, though, just to be safe.
Sunday November 7
Well, Julia is feeling 100% and she hasn't needed any medicine to get to sleep the past 2 nights. We're going to throw caution to the wind and reduce her Prednisone dose to 10mg/day today instead of tomorrow. She was thrilled at the decision. We also attended the monthly Sacrament of the Sick ceremony at our church today. These are such a joy and comfort; the support of the sick by our faith communities has been tremendous from day 1.
|Current Drug Dose:
||Folic Acid: 1mg/day
Wednesday November 11
The health feature reporter from the local newspaper was by tonight to interview us about JDMS. She said she received an anonymous letter [Thanks, whoever did it! I know you're out there!] pointing her to the Diary. She thought it was worthy of a story, as she agreed to come on over to our house tonight with a photographer. Cool.
She started the interview, asking about JDMS, about Julia, how we deal with it, and about the Diary. After just a couple of minutes, the photographer came by and took a bunch of photos, mostly of the three of us. After he was done, we finished the interview with the reporter.
She was very patient and thorough. She asked a lot of good questions, paid close attention, and took tons of notes (almost 20 pages worth!). We're very glad for Julia - she's been looking forward to this all week. This is also excellent exposure for Dermatomyositis; the more people that hear about it, the better. In fact, the MAA has been encouraging press exposure to heighten awareness of the disease.
The article is supposed to be in the paper Thanksgiving week. The paper does not have an Internet presence (yet). If I can't get permission from the paper to republish it here, I'll certainly publish my summary of it. We're all looking forward to seeing it!
Tuesday November 16
After an uneventful weekend, we had another Solu-Medrol infusion today. We'd received email from Dr. A.W. that we wouldn't see the doctors this week because the whole rheumatology staff is off at the American College of Rheumatology annual conference, which is being held right here in Boston. A lot of familiar names are presenting at this conference, including most of the Rheumatology team at Children's, plus Dr. Barohn and Dr. Reed from the MAA Conference last month, among others. The ACR conference is supposed to be a pretty big deal in rheumatology circles, so I guess we'll let the doctors off the hook this time.
The infusion went very well; the usual 1000mg of Solu-Medrol (Methylprednisolone) over 2 hours. Julia's height and weight are steady, and her BP and other readings were all normal. What was different and interesting was that another local JDMS patient and her mom were going to be there getting an infusion at the same time. They showed up about 20 minutes after Julia's infusion got started, and they set themselves up in the infusion bed right next to Julia's. The girl is just a few months younger than Julia, and seemed quiet or shy, but warmed up after a while. Her mom was there, and she and I had a very nice conversation. She and I had exchanged a few emails over the past few months.
She told me that Dr. S., who is also their doctor, asked them to visit Julia's Diary the day they received their diagnosis. She couldn't thank me enough for all the guidance and support that the Diary gave her and her family. I was very gratified to hear this, but I tried to hide it well :-)
We had a considerable head start, so we finished with our infusion way before them. We did hang around for a few minutes, on a rumor that Dr. S. might still stop by, but it's a school night, and Wednesday is Julia's busiest day of the week, so we made our way home. Julia was up pretty late. We had a look at her rash when we got home, and it looks fantastic. Her knees, which I call "camel knees" are practically perfect. Her eyelids are still pink, but the rest of her face looks great. In fact, her rash looked a lot worse while we were at Children's, but it looked so good afterwards.
Wednesday November 17
Dr. A.W. emailed us the results of yesterday's labs. Looks pretty good - everything is still in normal range. She also mentioned that it looks like the von Willebrand test was not run for some reason, but that we'll just take that into account when we make our next medicine change decision. The rest of the results were also normal: white blood cell count 4.52, hematocrit 41, and platelets 370.
Julia is really exhausted today. I guess she didn't get enough sleep last night or whatever, but she's skipping dance class today. We checked with the dance teacher, and she said Julia knows her steps well and doesn't really need the rehersal. Hopefully, she'll feel better tomorrow.
Thursday November 18
Julia did feel a lot better today; a big part of it was her attitude. The extra dance rehersals have become a real drain, both on our time and her energy, and being able to skip that class seemed to perk her up a lot. Plus, because of mom & dad's schedule, Julia has been able to sleep a half an hour or so longer in the morning.
Friday November 19
The dance show had it's dress rehersal tonight. Julia seemed to be dreading it all day, but she got through it all right. The problem was the schedule - the rehersal ran into the evening, and she didn't get home until very late, almost 10:00PM (and her regular bedtime is 8:30).
No one had eaten dinner yet, so we called in a pizza and set out the good dishes in the dining room and had a very enjoyable family meal together. Julia's mood was incredibly good - she was lighthearted and a lot of fun to be around. We never do stuff like this, eating a meal this late, but it was a good diversion, and she can sleep late tomorrow.
Saturday November 20
As expected, Julia did sleep late, and it turned out to be a good thing.
The dance show was great! It was a Christmas theme, with all holiday music and settings. It was a lot of fun to watch - even the youngest dancers seemed to have a good time. Julia was in several numbers, including Frosty the Snowman, All I Want For Christmas Is You, and others. She was smiling and looked like she was having a good time, and she obviously knew her steps - it seemed like the other girls were watching her!
Of course, the show ran later than expected, and again we hadn't eaten dinner yet, so we dashed out to one of Julia's favorite restaurants. We didn't get home until late again. Two nights in a row; what, are we turning in to night owls?!?
Tuesday November 23
Julia is now officially famous.
Remember that interview with the local reporter a couple of weeks ago? Well, that turned into a front page article in today's edition, complete with 2 large photos and a quote from Julia!! I'm impressed; the article is very well written, and only has a couple of minor details wrong. We've already gotten email from a few folks in town who saw it.
Now to see if they'll let me publish it on the web page.
Wednesday November 24
Dr. A.W. emailed us with the Aldolase number, 8.3. It's up slightly, but still well in the middle of the normal range. Give that, they are recommending that our next change is to space our infusions out again, this time to 4 weeks. Good stuff.
Thursday November 25
Happy Thanksgiving, everyone! We're on the road today, like many others, visiting family. Right before we left, Julia got her Methotrexate shot without EMLA. It was again a non-event. She agreed that we would not use EMLA for the MTX shots any more, and just for the infusions. She's being very brave about this.
Julia spent the afternoon with her aunt decorating a gingerbread house. It kept them both occupied all afternoon, and Julia seemed to really enjoy it. She didn't seem to overeat today, which is a good thing.
Sunday November 28
We spent most of this first Sunday of Advent (the start of the Christian church's year) afternoon trimming our christmas tree. I taught Julia how to use the CD player, and she was spinning the christmas carols for us. It's always a lot of fun to unwrap the ornaments and try to remember where they came from.
Julia had us check her plantar warts - and much to our amazement, they're all but gone. It was just a couple of months ago that we were slathering on smelly ointment to vainly try to get rid of them. I'm sure the acid treatments helped, but I'm convinced the Tagamet had a lot to do with it - the areas that weren't acid treated are also clear now! I guess we can discontinue the Tagamet after the prescription we have runs out. That's one less thing to deal with, at least for now.
Tuesday November 30
Julia and I had some fun decorating the house for Christmas today. Julia's mom was off to class, and we're planning to have some people over later in the week, so this was a good chance to get this job done. We have several plastic crates full of holiday decoration and such, and we had a good time unwrapping them, putting them out around the house, and wrapping up the non-Christmas stuff to put away until the new year.
Julia was in very good spirits tonight. She seems to be looking forward to Christmas in a way she hasn't before. She doesn't have an encyclopedic wish list, either. I hope she carries this good attitude with her for the rest of the year!
Back to October
Forward to December