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Wednesday, July 1

This afternoon, we had a checkup with Julia's regular pediatrician, Dr. L. He is very patient and thorough, and spends a lot of time asking Julia questions about her eating and exercise habits, her performance is school, what she likes to do for fun, and especially about safety (bike helmets, seat belts, sunscreen, etc.). After about 15 minutes of Q&A, we turned to talking about JDMS. We explained what drugs she's on, and talked through some of the effects we expect and the side effects we're dealing with. We talked about her symptoms and how they've changed since the last time we were in back in March. We also had the doctor who made the original Diagnosis, Dr. W., come in and say hello, and I got to meet him for the first time. Finally we got some paperwork done, and got the name of a local Opthamologist that we can bring Julia to instead of having to go into Boston. The name he gave us, Dr. H., is a doctor at the eye practice we already go to, so it'll be easy to set that up.

Friday, July 3

I had a holiday today, but Julia's mom didn't, so Julia and I had the day to ourselves. We ran a couple of errands, grabbed an early lunch, then went to see her all-time favorite movie, Titanic. Her third time, my second (the first was over 6 months ago, and the film is still in the theatres!). After, we made sure the sunscreen was up to date, and we played a quick round of mini golf. Julia is quite good, and although I won, it was only because she couldn't overcome a slow start. She was taking no prisoners on the back nine!

Saturday, July 4

Happy Independance Day! We had a quiet, laid-back holiday except we all went to see Armageddon. Julia seems to be a big fan of the action-adventure movies, not unlike her parents. Julia got her usual 20mg of Methotrexate today, but for the first time, she didn't say a word about being tired all day. I guess that tiredness was a fluke.

Sunday, July 5

Our phone lines have been semi-functional since last Tuesday (thanks for nothing, Bell Atlantic); they didn't ring, although we could place calls. Annoying, especially since we were waiting to hear back from Dr. A.W. She did call today, and the news is great! She didn't have the numbers on hand (she promised to get them to me tomorrow), but she did say that all her blood tests were in the "normal range". This is excellent news. We can now begin to lower her Prednisone dose at the rate of 2mg/day per week starting tomorrow.

Monday, July 6

I spoke to Dr. A.W., who consulted with Dr. S. and they both agreed that Julia's lab test results are excellent, all in a normal range. That, coupled with her clinical good results are very encouraging.

Current Drug Dose:

Prednisone: 14mg/day

Plaquenil: 200mg/day

Methotrexate: 20mg/week

Monday, July 13

It's been a quiet week, medically, for Julia; no problems to speak of, except a slight sunburn on her scalp after spending all yesterday afternoon in the pool at a picnic. Today, we lowered her Prednisone to 12mg.

Current Drug Dose:

Prednisone: 12mg/day

Plaquenil: 200mg/day

Methotrexate: 20mg/week

Saturday, July 18

All three of us are away camping (!) this weekend at the Normandy Farms Campground in Foxboro, MA, current home of the New England Patriots. We're here with a bunch of other families from our Marriage Encounter group. This place is great! It rained a bit last night, but the weather today is absolutely gorgeous. Since we're not at home, we have nothing to do, so we're doing stuff like reading, playing cards, and talking. Oh yeah, and eating. Lots of eating, everyone brought way too much food.

Julia spent most of the day at the pools. Unfortunately, that meant she spent a lot of time in the sun. We slathered SPF45 sunscreen on her every couple of hours, but by the end of the day, her face is all red. It's not a sunburn, though - her skin is more inflamed than burned. I hope this isn't too bad.

Sunday, July 19

Julia's face looks pretty bad. The cheeks are very red, but it doesn't quite look like a sunburn. She's also mentioned how uncomfortable it feels for her.

Monday, July 20

The skin inflammation is really bothering Julia's face. She's putting ice (wrapped in a face cloth) on it, along with cortisone creme, but it feels and looks swollen, especially her cheeks. I'm sure it'll get better, it was just like what happened in June, but this is worse.

Current Drug Dose:

Prednisone: 10mg/day

Plaquenil: 200mg/day

Methotrexate: 20mg/week

Wednesday, July 22

The face is looking a little better, finally, but people are going to be asking about her "sunburn" for the rest of the summer.

Saturday, July 25

The "Saturday Tireds" are back. Sigh. Julia was dragging around all afternoon, not feeling like doing anything, and complaining about being tired (what seems like) constantly. This didn't happen last weekend because the camping trip had her sufficiently distracted and motivated to keep busy that she wasn't thinking about it.

Sunday, July 26

Julila's face is not looking as good as I thought - several people at church asked about her "sunburn" today. I've got to come us with an answer to the question that doesn't take a 10 minute explanation.

Monday, July 27

Current Drug Dose:

Prednisone: 8mg/day

Plaquenil: 200mg/day

Methotrexate: 20mg/week

Friday, July 31

Julia set off to be away from home for a while; My wife and I are off for a vacation alone tomorrow, and Julia will be staying with nearby relatives. We had tried to set up as much stuff for Julia to do while we're gone, and while she's looking forward to all that, she's a little bummed out this morning at the prospect of not seeing us for a week and a half. I asked them to keep an eye out for Julia's medical progress, especially tiredness on Saturdays, and let me know when we get back.

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