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Saturday, December 1

Julia had planned to spend the day with a friend from school, but because she had been sick the past couple of days, it seemed prudent to put off that date for a while - 2 weeks to be exact. It turned out that she was feeling great, with no lingering effects from her illness. Instead, Julia & her mom went off Christmas shopping while I took advantage of a gloriously warm December day to wash and wax one of our cars.

Sunday, December 2

We took Julia for our monthly Sacrament of the Sick ceremony. We are still getting used to a new priest at our church. He has many wonderful qualities, but he does things differently and that is taking some getting used to. The ceremony is still beautiful nonetheless, and gives us the strength to get through the more difficult days.

This being the first sunday of Advent, we put up our Christmas Tree today, and lighted the first candle on our Advent wreath at dinner time. This is a wonderful, special time of the year, and our schedule does not look too crazy - maybe we can actually enjoy it!

Sunday, December 9

We discovered this morning that Julia managed to skip a day of meds some time in the past few days. The reason we can tell is that we have a 7-day pill box that I fill every week. Julia always takes the set of pills for the designated day of the week - this is because Thursday has different meds than the other days because of Methotrexate and Folic Acid. I check it as often as I can to see if the current day's pills have been taken.

Today, Julia swears she took her meds in the morning with breakfast before church, and I remember seeing her take them. However, there is still a set of pills in the Sunday pill box. Uh oh. Fortunately, this has happened before to no serious bad effect.

Saturday, December 15

We took our December ride into Boston for blood work, a couple of weeks late. It was a miserable, cold, rainy day, but at least it wasn't snowing!

In the afternoon, we attended a local production of The Nutcracker, the wonderful Tchaikovsky ballet with a delightful holiday theme. We ran into several people that we know who were also there to enjoy the performance, and I actually am a co-worker of one of the main characters in this production.

The performance was wonderful! They had almost all local talent, but some of the dancers are actually studying dance in college, and there were also a pair of professional damcers who were simply amazing to watch. Julia was entranced, and it talking about trying out for next year's production.

Test Date Aldolase CK LDH AST ALT vW F8
1/9/01 9.8 78 197 26 24 101
2/3/01 4.7 73 212 28 24 91
3/3/01 4.6 84 211 28 26 123
3/31/01 5.2 98 209 26 21 141
5/1/01 4.8 93 219 26 21 105
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
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Sunday, December 16

This was our day to finish getting ready for Christmas. We spent hours upon hours wrapping every present we could. It was a long day on our feet, but it was worth it! The cards are all sent, the tree is trimmed, the house is decorated, and the wrapped gifts look wonderful under the tree.

Julia helped, but she also has a couple of projects due in school this coming week. She spent the bulk of her time working on them. She finished one (good thing, it's due tomorrow!), and is just about done with the other. I should be an easy week for her in school before her Christmas break.

Monday, December 17

We already heard back from Dr. A.W. about Julia's blood work results - they are great! Everything that was up a little last month (but still in the normal range) and is now back down where it had been. Here are the raw results: CK 92, LDH 218, AST 22, ALT 12, aldolase 5.1, white blood cells 5.58, hematocrit 39.7, platelets 447, and sedimentation rate 9. We're still waiting on the von Willebrand's result, but we're optimistic that it, too, will be good and we can actually discontinue a drug this week - Methotrexate (and Folic Acid). We shall see.

Wednesday, December 19

We heard from Dr. A.W. late tonight, and Julia's vonWillebrands is 94. This is excellent! This means that last Thursday was officially Julia's last dose of Methotrexate. Tomorrow will be her last dose of Folic Acid as well; we wanted to just finish up the pills we still had on hand, which is okay with the doctors. This is a wonderful early Christmas present for us!

Thursday, December 20

Current Drug Dose: Prednisone: 3mg/day Calcium: 900mg/day

Monday, December 24

It's Christmas Eve, and all of us have this week off! We have a fair amount of traveling and visiting and entertaining to do, but we also hope to have plenty of family time together. Today, we just did a few last-minute things around the house, then headed out to visit with family. We went to church at 10:00PM, the Christmas vigil mass, which is very unusual for us. Julia was totally exhausted by the time we got home, and she had no trouble falling asleep as soon as we got home at about 11:30.

Tuesday, December 25

Merry Christmas, everyone! (If you don't celebrate Christmas, feel free to translate that greeting into whatever you judge to be appropriate. No Political Correctness here, and no apologies.) Julia work herself up bright and early, and we shared our presents with each other. Julia scored a Palm M100, which she has spent no end ot time with today. Julia's mom got herself some Longaberger baskets, and I got some stuff for my car. Everyone was happy!

Wednesday, December 26

The day after Christmas, Julia's mom usually goes shopping for bargains, and this was no exception. I had some work to do on my car, and Julia often, but not always. joins me to watch, learn, and help out a little. It's nice having the company when I'm working on the car, and I hope some of it rubs off on her.

Friday, December 28

We had a surprise birthday party for Julia's grandfather, who turned 80 today. We invited all his siblings and had a lunch for him. He was totally not expecting it! He had a great time, and so did we.

Saturday, December 29

With great anticipation (at least by me), we all went to see Lord of the Rings: Fellowship of the Ring (imdb, metacritic) today. I remember reading these Tolkien books (The Hobbit, The Fellowship of the Ring, The Two Towers, The Return of the King) as a teenager and being mesmerized by them. I was hoping that the movie would live up to my memory of the books.

This film was all that and more. This movie has it all. It captured the spirit and essence of the book, was beautifully filmed, the acting was wonderful, the pacing was good. I was very caught up in the story and I'm very much looking forward to the next two installments of the series, which have already been filmed. Even Julia liked it, and said she wants to go see it again. Okay, I think wee can arrange that!

Monday, December 31

The tumultuous year of 2001 draws to a close. It was a difficult year in many ways for many people, but it has been a very good year for us as a family. Julia's health has never been better. She has stopped taking Quinacrine and Methotrexate this year, and her strength has fully returned to normal. We did a lot of fun things together,

This New Year's Eve, we stayed home and watched movies on TV. Funny how a week ago, Julia could barely stay awake for Christmas Eve mass, but tonight she was raring to go until past midnight! Go figure! I was a party pooper - I stayed up for midnight, but I was in bed by 12:02 and was asleep moments later. Happy New Year!

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Updated January 3, 2002
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