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Monday, January 1

Happy New Year! As is normal (for us), we went to 9:00AM mass to begin the new year. This posed no problem for me, as I need less sleep than most, but the girls were a bit groggy. Still, getting up relatively early is good discipline, especially since tomorrow is back-to-school and -work, so we don't want to sleep all morning and be unable to get to sleep tonight.

Sunday, January 6

Our regular parish priest is away visit a mission he started in Haiti, so we had a visiting priest deliver the Sacrament of the Sick today. It's not what we are used to, but I don't think God minds at all.

Monday, January 7

We have a cat named Larry. Larry has not been doing well in recent weeks, acting strangely (loudly meowing at all hours, drinking excessive amounts of water, and missing her litter box when she uses it), and also being sluggish and unresponsive. Given that Larry is almost 18 years old, we feared that she was in the midst of a final decline in her health.

We took Larry to the veterenarian. The vet was frankly surprised at how well Larry was doing, considering her age. He said that cats typically live 12-15 years, so Larry is doing very well considering. They took a bunch of blood for testing and they'll let us know when the results are in. He said it might be a kidney problem, or it could simply be a virus.

Julia was pretty upset by all this. Larry is the only pet she's ever known. We have been talking about the possibilities, what to do if Larry needs treatment or if she can't be helped. We will have to wait and see.

Tuesday, January 8

Larry's blood tests came back, and everything is normal. The vet was surprised by this. He was expecting to see an indication of a chronic condition. However, given the results, he said that Larry must just have a virus and to give it a few days to see if she gets better. He also said that Larry's behavior is the feline equivalent of semility, and there's nothing we can do about that except live with it.

We were all pretty relieved to hear this. We'll have to see how Larry does as this week goes on.

Thursday, January 10

Larry is doing much better. She back to her old self, pretty much. It looks like she's going to be with us for a while longer.

Saturday, January 12

After her keyboard lesson, Julia went off to a birthday party for a classmate. There were only 5 or 6 girls invited, so Julia was thrilled to be among the "elite". The group took a road trip to see the 10th anniversary release of Disney's Beauty and the Beast. What was special is the film was shown on the giant imax screen at the Providence Place mall.

Julia said that the movie was amazing in imax, and they added a couple of scenes to the movie. This was one of Julia's favorite Disney movies when she was little, and she watched it a minimum of literally 100 times. She said that everyone enjoyed the movie and had a good time.

Monday, January 14

Julia had her ballet lesson today, and they went "en pointe" for the first time. Apparently, a lot of time was spent adjusting everyone's toe shoes, but they actually get up on their toes. Julia has been looking forward to this for a while, I hope she enjoys it. I certainly doesn't look like much fun to me!

Saturday, January 19

Today started with Julia's piano lesson, and a quick run into Boston to get blood work done. After lunch out and running a few errands, we headed out to another JRA (Juvenile Rheumatoid Arthritis) support group pool party. JDMS has such a small population that there never seem to be enough cases in one area to maintain a support group, so our "official" local JDMS support is through our local JRA chapter. A few times a year, they have informational meetings with guest speakers, and also these get-togethers. We've been to a few of these in the past, and we've always enjoyed them.

This one was held at HealthPoint, a fitness center that we visited last year around this time. Turnout was very light, probably because snow (3-6 inches) is in the forecast for later in the afternoon. We started out with time in the pools. Julia swam mostly by herself, but she says she loves to swim.

After only about half an hour in the pool, we headed to the kids' gym ("KidsPoint"). There's a new climbing gym, tumbling mats, basketball hoops set to about 9 feet, and other assorted equipment. While the kids played, the parents assembled for a talk. There were only about 5 families in attendance, so it was rather intimate.

The speaker talked about making time for ourselves to do active and stress-reducing activities, so that we, as parents, can be more effective caregivers. It's a very important topic - I know how easy it is to let things go when Julia is not feeling well.

The natural parental tendancy is to throw body, soul, and spirit into making your child better, and the parents invariably suffer for it. As we struggle, the theory goes, we are not able to be as effective as caregivers. The speaker gave us ideas for spending time on ourselves and gradually building up to a point where we are physically active and less stressed.

After the talk, we and the kids had some pizza, juice, and other snacks, then we headed home. Julia had a good time, and the speaker was worth listening to. Indeed, when we left, there was already a half an inch of snow on the ground and it was snowing at a good clip. The roads weren't too bad, and we made it home okay.

However, our day wasn't done! We got home and did a couple of things, then headed out to a party to watch the New England Patriots play in an NFL playoff game. What a game!! This was one for the ages. Since it was snowing here, naturally it was snowing 30 or so miles away at Foxboro Stadium. Everyone was yelling and screaming and we were exhilirated at the eventual outcome, an overtime Patriots win. We had a great time, but we didn't get home until after midnight! What a day!!

Test Date Aldolase CK LDH AST ALT vW F8
6/2/01 4.8 88 186 23 15 106
7/7/01 5.1 115 211 33 35 147
8/4/01 4.2 90 218 25 12 123
9/1/01 4.6 80 194 24 16 105
10/8/01 3.5 81 197 22 12 123
11/3/01 6.1 120 232 23 14 92
12/15/01 5.1 92 218 22 12 94
1/19/02 5.3 102 198 21 12 193
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Tuesday, January 22

We took a ride into Boston for another checkup. There was some bad traffic just in the area of Children's Hospital, and parking was a chore as usual, but we still managed to get there early because we left a lot of time. We always schedule appointments at the end of the day so as to minimize the amount of school time that Julia misses. However, if there are delays or other problems at the hospital, they naturally spill over into the last appointments of the day. We had a 4:00 appointment, and we didn't get to see a doctor until 5:20. Good thing Julia brought her homework to do, and I brought plenty of reading material. We understand that things like this happen, but it's still a bit aggravating.

Before we saw the doctor, Julia got height (+0.6cm in height, to 138.6cm, or 54.5"), weight (+1.3kg to 40.5kg, or 89.2lbs), temperature (36.0°C or 96.8°F), and blood pressure (135/57) done, all normal. We also talked with our favorite nurse, who asked us some preliminary history questions. She also graciously printed me a copy of the Lab Results sheet which the doctors looks at. It has complete results from the latest lab tests, plus the previous two results on file so that trends are easy to see. (see the usual results in the table above).

We never did get to see Dr. A.W. today because she was tied up with another patient. We saw Dr. S. instead, which was an unexpected and pleasant surprise. We chatted a bit and gave him some general information. He examined Julia and seemed impressed by her strength and how good her rash looked. He put some oil in Julia's fingernails and said that her nailbed capillaries shill prominently show abnormalities. He said that is expected, and it would take several years before those would go away. He brought in another doctor to see them, and she commented about how obvious and easy to see these abnormalities were.

We then talked about tapering Prednisone. He said that we can start to taper Julia to 2mg of Prednisone per day starting tomorrow. He said that because we are doing this, Julia may start to feel tired at times. That would be normal and caused by the tapering and not because JDMS is coming back.

He want on to say that because Julia has been on Prednisone for so long, that her body may not make enough natural steroids (hydrocortisone) on its own once she stops. He said that once Julia is off of Prednisone in a couple of months, we will want to do a lengthy ("several hours") test to see if her body is making steroids. He didn't elaborate on what this test is exactly, nor did her say what we would do if we find out that Julia is not making her own steroids. We will have to find out this information later.

That pretty much wrapped it up. We had dinner in the hospital cafeteria, to allow a little time for rush hour traffic to thin out, and had a nice ride home. Julia had a lot of questions for me about what it takes to become a doctor. I answered as best I could. She now says she wants to be a rheumatologist when she grows up!

Wedesday, January 23

It figures that the day we start to taper Prednisone, Julia picks up a bug. She got through her day okay, but at the end of the day, Julia was sniffling and feeling generally lousy. She also hardly ate anything for supper. We gave her a decongestant at bedtime so she could sleep, and she did fall right to sleep and didn't wake up during the night.

Current Drug Dose: Prednisone: 2mg/day Calcium: 900mg/day

Thursday, January 24

Julia woke up feeling lousy again, pretty badly congested. We gave her another decongestant and had her get ready for school. We left it for her to judge when the bus came whether she was up to going to school. She wasn't, and spent the day at home. This means she'll miss dance class today, too.

Dr. A.W. emailed us back some more information about the test that Dr. S. was talking about. It's called a cortisol (ACTH) (cortrosyn) stimulation test. The way this works is they administer ACTH (adrenocorticotropic hormone), a pituitary gland hormone, to Julia intravenously. This should cause her adrenal glands to produce cortisol, the natural human steroid. Measurements are taken over several hours to measure the level of cortisol in Julia's blood. They would use a "blood drawing IV" so they don't have to do repeated needle sticks.

The hospital's Endocrinology department would examine Julia first, determine if she needs the test, then actually conduct the test if she needs it. This test would be done in the CAT/CR, like Julia's series of infusion back in 1999 were. All this would happen once she is completely off of Prednisone.

By the end of the day, Julia was feeling a lot better. In fact, there was no way to tell she'd even felt sick! We put her to bed early and she got right to sleep.

Saturday, January 26

After being sick Wednesday and Thursday, Julia seems to be an energetic and lively as ever. She is exhibiting no sign of tiredness at all. She went shopping with her mom for several hours today, and reportedly kept up extremely well.

Sunday, January 27

We made the mistake of watching last week's Patriot's game at the house of a rabid and superstitious fan. This meant we were required to attend today's game, bring the same food, and even wear the same clothes! I am not making this up.

The Pats were underdogs, and not expected to win. The Steelers had been making noise in the news all week about going to the Super Bowl in New Orleans However, as with last week's game, the Pats played very well and won the game! Everyone at the party was yelling and screaming at the top of their lungs, and also like last week, everyone was a little hoarse by the end of the day.

Monday, January 28

This is Catholic Schools Week, and Julia's school has lots of activities planned. Today, they are taking a prayer walk through downtown. The weather is cooperating nicely - it's in the 50's today, which is unusual for this time of year in New England. Julia said the walk went very well, and everyone had a nice time.

Tuesday, January 29

Today was Student Appreciation Day at Julia's school, and everyone got to "dress down" and not wear the usual uniforms. Julia loves this, and lately she's been spending more and more time agonizing over what to wear on these days. They also got no homework today, and Julia was very happy about that.

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Updated February 8, 2002
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