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Saturday, April 1
Julia is beeling a lot better today, after getting a good night's sleep. Julia & her mom went shopping while I stayed home and did the taxes. Julia held up very well shopping all day. Despite being out all day, and just having gotten over a virus of some kind, Julia's rash looks exceptionally good. I swear, if you didn't know she had the rash, you wouldn't notice it. She still has bad days with it, but it's really looking great today.
Sunday, April 2
Julia celebrated the sacrament of the sick today after mass. After grabbing some lunch, we went for a long walk. We did some exploring in the woods in our neighborhood, and ended up walking about 2 miles each way to go get a snack. It took us over an hour and a half, and Julia held up extremely well. We really needed to see this in her.
Today is also the start of Daylight Savings Time, and it now will stay light longer into the evening. We've resolved to start walking in the evenings to try to get some exercise - we all need it!
Tuesday, April 4
Over the weekend, I was interviewed via email about Julia, JDMS, and this web site by a guy names Tom Mangan. Tom is a journalist who runs a web site called Seven Questions, on which he interviews people who have a web presence who he thinks has something interesting to say. I thought the interview came out well, and I hope it raises awareness of JDMS in some small way. Thanks, Tom!
The interview is at: http://tom.mangan.com/new7q/ralphbecker.htm
[Apologies to all the regular readers looking for an update for the long delay. I've just been too busy!]
Thursday, April 6
Julia has been having a great deal of difficulty adjusting to Daylight Savings Time this week. She's been wide awake at bedtime, and tired and crabby in the morning. She says she feels tired and sluggish all day. I really don't think this is the disease rearing up, she's just not getting enough sleep.
Saturday, April 8
We took part of day to do something we rarely do anymore - just walk around the mall and do a little shopping. Julia held up extremely well. She showed no sign of fatigue even though she was on her feet most of the day. Good stuff.
We have noticed that her skin is taking on that yellowish color more and more. It seems to peak several hours after she takes her Quinacrine. It's really very noticible on her face. No one has said anything to her (or us) about it, but Julia has taken to calling herself "Pikachu".
Monday, April 10
Julia has been trying to do situps on a regular basis the past several months. She hasn't really been able to do one since late in 1998. Lately, she's been puching herself, and a couple of weeks ago, she did her first real situp! There was no cheating - she had her feet under a piece of furniture, knees bent, hands crossed over her chest. Encouraged by her success, she's been practicing and tonight she did 4 situps!! This is an amazing thing to see.
She's also been more conscious about her weight. She's been weighing herself, and she seems to be actually losing some weight. She's lost about 4 pounds on our bathroom scale. The real test is when she gets weighed at the hospital.
Saturday, April 15
We attended our parish's annual Seder Supper. This event is always very rewarding and a lot of fun. Julia was looking beautiful in her new blue dress. Several people commented to me on how good Julia looks. This is very encouraging - they're more objective because the don't see her every day.
Sunday, April 16
There was a special on local TV this afternoon that features, in part, none other than our own Dr. S.! It was a special on Arthritis, and he was interviewed about JRA. He came across very knowledgable and professional. Nice work, Dr. S.!
Tuesday, April 18
Julia had another appointment with the rheumatologists today. It went very well. Dr. A.W. scheduled us today so we could come while Julia is on school vacation and didn't have to miss any school. (Thanks, Dr. A.W.!) We had to wait a while, but it was a good time to come.
Julia has actually lost a couple of pounds and grown about half an inch. It really shows on her! Her temp and BP are normal.
Dr. A.W. saw Julia first. She just chatted for a few minutes before launching into the questions and tests. She covered all the ground very well, as usual. Julia seems to be at full strength, and her rash is looking markedly better than when she saw her back at the end of February.
Dr. S. came in with a medical student and a resident. First, he had Dr. A.W. present the case. Them, the four of them proceeded to look Julia over very carefully. Dr. S. was careful to point out the unique characteristics of JDMS.
While he was showing them, he noticed a couple of tiny marks on the palm of Julia's left hand. Dr. S. said these may be tiny indications of calcium deposits, called calcinosis. He said that he is not at all concerned about these, and expects them to go away. He said that in his last 35 JDMS cases, only one has had calcinosis that required treatment. He said this is because they treat it aggressively. It generally only gets out of control in cases where the diagnosis is delayed, or treatment is too conservative.
Dr. S. then finished the clinical exam with the usual strength tests, and he seemed pleased. We're going to lower either Prednisone or Methotrexate, depending on how the lab results come out.
On our way out of the hospital, we stopped in to the CAT/CR to drop off some videos that Julia has outgrown. It was great to see those familiar faces! They all remembered Julia, and commented on how good she's looking.
Dr. A.W. emailed us the early lab test results - and they are great! Continuing to improve on last month's results. In addition to the table below: Sedimentation Rate 7, White Blood Cells 5.06, Hematocrit 40.6, and platelets 399.
Thursday, April 20
Despite the fact that we aren't doing anything special for this week, Julia seems to be really enjoying the time away from school. She pushes herself so hard, that the break is a big relief for her. She isn't even really getting enough sleep this week - we've been letting her stay up later than usual, but she still has to get up early so we can get to work in the morning.
We went to Holy Thursday mass tonight. Julia was most excited by the presentation of the holy oils, specifically the oil of the anointing of the sick. She's been a heavy user of the stuff the past couple of years.
Friday, April 21
Julia has been taking private keyboard lessons every Friday all this school year. She really has shown dramatic improvement. She went from some simple melodies to full use of both hands. She's now learning alternate positions and can play some of her songs in multiple keys. She seems to have some talent for this. I only wish we'd started her sooner!
It is Good Friday, the most solemn day on the church calendar. It is a day of fasting in the Catholic church, but Julia did not fast today. She learned her lesson well from Ash Wednesday. The Good Friday service is not a mass, and it has special ceremonies that only happen on this day. It's very powerful to experience the death of Jesus through these ceremonies.
Saturday, April 22
Julia looked wonderful in her Easter outfit. Unfortunately, she'll probably never wear it again. She received many comments and compliments at church tonight about how good her rash looks, and it does look great. Her yellowness was very pronounced earlier in the day, but it's a bit more subdued by the evening.
Tonight's mass is the Easter Vigil. It's not supposed to start until after sunset, so it started very late at about 7:40. This is the mass the celebrates the risen Christ. It's a wonderful, regal experience. There is the blessing of the Easter candle, several wonderful readings, and enough incense to make your clothes smell for hours. We also confirmed 4 adults into the church, and two took their first communion. It's a truly joyous night!
Sunday, April 23
Happy Easter, all! The family took a road trip to visit some family down in Connecticut. We actually had a pretty nice time, except the traffic coming home was horrendous. The trip that usually takes less than 2 hours took almost three. Yuck.
Tuesday, April 25
Dr. A.W. sent us the Aldolase lab result - 3.7! Wow, this is great - the normal range is 3-16, so Julia is now very low in the range. We're still waiting on von Willebrand's before we make any changes in meds, but everyone expects it to be good news.
Thursday, April 27
Dr. A.W. emailed us the von Willebrands number - 145! She even called it "great" and "fantastic" - everythign is in the normal range. She says the next step is to lower the Methotrexate one more step, to 25mg/week, starting next week (we already gave Julia her shot this morning). That works for me.
Saturday, April 29
A strangely quiet weekend. We did some stuff around the house, and went to a movie this afternoon. We noticed how well Julia is climbing into our car - she practically leaps into it now, A few months ago, she was having noticible trouble with it. She's really doing great!
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