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Saturday, November 3

We took Julia in to Boston once again for blood work today.

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
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Wednesday, November 7

We got the results back on Saturday's blood work via email today. Dr. A.W. says that the numbers look great, but a closer look shows that Aldolase, CK and LDH all went up, while von Willebrands came way down. Still all the numbers are in the normal range, and we're going to reduve Methotrexate one more pill, from 5.0 to 2.5 mg/week, starting tomorrow. Here are the raw lab numbers: vonWilibrand's factor 92, aldolase 6.1, CK 120, LDH 232, AST 23, ALT 14, sedimentation rate 9, albumin 4.4, white blood cells 5.02, hematocrit 38.5, platelets 420.

Thursday, November 8

Current Drug Dose: Prednisone: 3mg/day Folic Acid: 1mg/day Calcium: 900mg/day Methotrexate: 2.5mg/week

Saturday, November 10

Julia has a holiday dance recital next weekend, and they have having extra rehersals to prepare. Last night, they rehersed until almost 8:00 PM, and to day was dress rehersal, almost 5 hours for Julia. It was grueling and exhausting for Julia, and frustrating for her because they were repeating numbers she knew well because several other girls didn't. Still, she held up very well and I know she's ready for her shows.

Sunday, November 11

We decided to try something a little different to spend our Sunday together. After church, and Julia's children's choir practice, we headed out to try Geocaching. The best way to describe Geocaching is a treasure hunt using a GPS device to lead you to the treasure. This lets us spend time together, get some fresh air and exercise, and have some fun! I got a Garmin eMap handheld GPS mapping device for Christmas last year, and I've had a lot fo fun with it. Not to mention that it's helped me keep from getting lost! Today, we put it to use.

The way this works is you visit the Goecaching web site look up a cache of goodies that someone has hidden near you. They are all over the country, and there are several within a few miles drive of where we live. We settled on 3 or 4 in the same general area and headed out.

The first cache was pretty easy. We parked nearby and hiked into the woods. Julia found the cache right away! It was sealed in an old ammo box. We took a couple of items, and left a couple. We signed the log book, and headed out. This was pretty easy! We stopped for lunch and then looked for the second cache.

The next one was a challenge. It was about a half mile in from the road where we parked, and once we got near it, there were no trails leading to the cache. We looped around and around and finlly got close to it, but the GPS unit was having trouble homing in on the coordinates. It took us over half an hour of apparently aimless wandering around, but i finally found the cache. It was well hidden, under a big rock and mostly covered with leaves. We signed the log, took a couple of goodies and left a couple, and headed out. This cache was a lot of hiking and searching, but it was very satisfying to find it!

We decided to go for one more cache. It was just a few miles down the road at a high school, and it was a very easy hike. Again, we had a little trouble locating the cache, but this time Julia's mom found it, again under a rock and covered with leaves. Seems to be a pattern! This cache had a disposable camera in it and we took our pictures, signed the log, and swapped some goodies.

All in all, this was a great way to spend a few hours outside on a crisp, late autumn day. We are looking forward to doing this again, and to maybe creating our own cache.

After we got home, we watched a movie and then had a bit of a crisis. Julia suddenly started screaming that something was on her! Sure enough, what turned out to be a tick had attached itself to her side, just below her right arm. We had to calm her down, then searched for what to do to remove it. We found this web site, and use a fine pair of tweezers to gently pull the tick out. Mom actually did the pulling, sice she has a lot more experience with the tweezers than I do!

Wht a little gentle persuasion, the tick came out. We disinfected the area, and put a bandage on it. Then we each checked each other for other infestations, and happily found none. We'll have to keep an eye out on this. I'm not worried about Lyme Disease, it's the wrong season for that to be a problem, according to the information I found. Still, we will have to be more careful next time.

Monday, November 12

Julia's tick bite is nothing more tha a little red spot today. I don't think it'll give her any more trouble.

Saturday, November 17

Tonight is the first of two nights of Julia's holiday dance recital with the "Broadway Youth Dance Theater". She and all the dancers have been putting in long hours of rehersal in recent weeks.

The show was wonderful!! Some of the numbers were the same as last year, but there are plenty of new numbers, too. The costumes and stage sets are great, and the show was very entertaining and fun to watch. Julia did a great job!

Sunday, November 18

Julia's grandparents came in to see this afternoon's show. There were only limited tickets available due to the size of the auditorium, so I didn't get to see this show, but I am told it was very entertaining, just like last night's show.

Tuesday, November 20

I picked Julia up from school early so we could gointo Boston today for a checkup at Children's. Today is her last day of school before Thanksgiving break, and she had her progress report (report card). Julia is truly amazing - she got straight A+ grades in all her subjects! She has worked very hard all this school year, and she really earned those grades. Nice job, Julia.

Julia was seen by a new Pediatric resident, Dr. T. She is cruising around to various specialties while at Children's, hoping to be a general pediatrician, and is currently in Rheumatology.

Dr. T. gave Julia the usual interview and a physical exam. She wasn't too familiar with JDMS, so Julia and I passed along a few nuggets of helpful information, like using petroleum jelly to look at the fingernail beds for capillary abnormalities, and noticing the color of Julia's eyelids.

After a few minutes, Dr. A.W. came in and repeated the interview and the physical, and declared that Julia's strength is still at 100% (woo hoo!). We then talked about the next step, which we will take if Julia's numbers are good next month. That would be discontinuing Methotrexate entirely, and also Folic Acid. I asked about just changing one thing at at time, but since we're giving Julia Folic Acid just to counteract side effects of Methotrexate, it will be okay to discontinue both at the same time.

It was a pretty routine visit, all in all. Afterwards, we went out to dinner to celebrate her fine report card.

Thursday, November 22

Happy Thanksgiving, everyone in the US! We had a nice, quiet day at Julia's grandfather's house. Too much food was eaten, too much television was watched, but that's what holidays are for, right? We have a lot to be thankful for this year, and at the top of our list is Julia's good health.

Friday, November 23

We took Julia to see her first Boston Celtics game today. I've been a Celts fan for many years, going back to the beginning of the Larry Bird era while I was in college. I've been to a few games back in the Celtics' heyday in the 80's, and this was my first Celtics game in the replacement for the old Boston Garden, the Fleet Center.

We got a fairly early start, and got into the area around 5. We parked nearby and then found a pub-like place to get some supper. Then we walked over to the arena.

This is a very nice facility, and we had pretty good seats (I bought the tickets online the day before public ticket sales began because of a special promotion with our cable modem provider). The Celtics were playing the Toronto Raptors and their star player, Vince Carter. It's pretty easy to follow the Raptors on offense - just watch Vince. He's a spectacular player (and had a highlight-reel dunk late in the game), and he touches the ball almost every time they come down the floor.

Julia and her mom really got into the game - they screamed like crazy every time the Celts did something good. The Green played mostly well through the first three quarters, building to a lead of up to 15 points. However, they fell apart late in the game and ended up losing by 2. Being a follower of the team, I have come to expect this sort of thing, but we were all disappointed that the results weren't more positive. Despite it all, we really enjoyed the game and the experience.

Monday, November 26

Julia has ballet lessons on Mondays, and today they are starting to work on toe dancing. This is a highly unnatural-looking dance form that has dancers putting their weight directly on their toes, which are pointed straight down. Ouch. Julia has actually been looking forward to this. Go figure.

Tuesday, November 27

Well, one thing we just plain forgot to do at Children's last week was get Julia a flu shot. We called and got an appointment at our regular pediatrician's office, and got the shot today. It was a quick visit, and Julia didn't complain about the shot.

By the end of the day, she was complaining mightily about how sore her arm was where she got the shot. She usually doesn't want to take Tylenol or Ibuprofen for pain, but she actually asked if she could have a pill before bed. I got my flu shot last week, and the next day it felt like I'd pulled my tricep muscle, so I know what she means. I gave her an ibuprofen, and it dulled the ache enough so she got to sleep no problem.

Wednesday, November 28

It looks like Julia might be getting a cold. It could also be a reaction to the flu shot, not sure yet. She is starting to get stuffy and she says her throat hurts when she swallows - she was complaining about it at supper tonight.

Thursday, November 29

Okay, Julia really is sick. She woke up at 1:00AM crying about how much her throat hurt, and she felt hot. Turns out she had a fever of 100.3°F. We gave her some ibuprofen for the sore throat and fever, and a decongestant for her stuffiness. She eventually got back to sleep, but we decided to keep her home from school today. Her fever was not as high this morning, and we decided not to give her anything for it unless it got over 100°F and she was not feeling well.

Well, by midday, her fever went up to 101.4°F. I told her to take an ibuprofen, and we called Children's. It took them several hours to get back to us, and by then Julia's fever had subsided and as back down to normal (98.8°F) by the evening. Dr. A.W. eventually called back and said this because of the sore throat, this was probably not a reaction to the flu shot, as we had thought, but most likely just a coincidental cold.

Friday, November 30

Julia woke up diring the night again and her fever was back to just about 99.2&def;F, but she seemed to be feeling a lot better. It still never ceases to amaze me how quickly she bounces back from stuff like this. We decided to keep her home from school one more day so she can rest and recover some more.

By the end of the day, she was feeling 100% fine, and said she wished she'd gone to school! I'm still glad we decided to keep her home. It gave her that change to rest some more, and also some time to work on yet another class project she has due soon.

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Updated December 6, 2001
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