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Friday, August 4

Julia has developed a small, dark red spot on the left side of her chin. She gets these from time to time, and they just come and go. They are some sort of manifestation of her rash; she calls then "JDMS Rash Spots."

Saturday, August 5

Julia and I took a ride into Children's Hospital to get blood taken. Partial results posted below.

Julia also had her first keyboard recital this afternoon. She's been getting private weekly lessons for almost the past year, and she's shown a lot of talent. Her instructor has 7 students, including Julia, and they all took turns playing. Some were better than others, and all of them were at least a little nervous. They all tried their best and did a great job! We were very proud of how well Julia did - she played three songs and they sounded wonderful. She also got to introduce the instructor, who played an impressive Ala Turca by Mozart.

Test Date	Aldolase	CK	LDH	AST	ALT	vW F8
11/16/99	8.3	113	273	30	27	195
12/14/99	6.3	88	249	24	21	135
1/18/00	6.5	72	247	23	20	168
2/29/00	6.0	74	230	24	32	190
3/18/00	5.2	54	213	25	25	148
4/18/00	3.7	50	190	22	13	145
6/6/00	5.6	67	204	23	21	148
7/8/00	6.0	72	248	28	25	170
8/5/00	70.4	77	219	33	32	137
Normal Range:	3.0-16.0	4-150	110-295	10-34	6-30	160

Tuesday, August 8

Julia has been practicing doing sit-ups lately, and tonight, she snapped off 20 of them! I actually think she could have done more. Wow!!

Wednesday, August 9

Dr. S. sent us the preliminary test results via email today - CK is 77, LDH is 219, AST 33, and ALT 32. ALT is only slightly above normal, so he said we would not change what we have in mind based only on that. He said we are still waiting on Aldolase.

Friday, August 11

Dr. S. sent us an email today with the Aldolase result. He said the reading was 70.4!! Let that sink in for a minute - it's more than a full order of magnitude higher than last month (6.0). That's obviously way out of whack with reality. Last year, when Julia was hospitalized, her Aldolase reading was under 16. Dr. S. said he was "incredulous," so he re-ran this test, but got the same result back. I imagine he had this result back on Wednesday, but wanted to re-run it and it takes at least a couple of days to get an Aldolase result.

Dr. S. does not believe this is an accurate result, especially based on how well Julia is doing otherwise. He said will will simply ignore this test result, and rerun tests when we go into clinic in September.

I am speculating that this is a lab error; either the sample was contaminated, or confused with someone else's. It's kind of scary to think that we are basing treatment decisions on these lab results when they can make a mistake like this.

Saturday, August 12

And so begins our first full day of our summer vacation as a family! This is the first time in many years that we are taking an "at-home" vacation - we are not planning to go away anywhere. We each have some things we'd like to get done at home, and we have some day trips planned. It should be productive, yet fun and relaxing.

Today, we paid a visit to relatives in a nearby state. It was a cloudy and cool day, and threatened rain all day, so it was good that we didn't have anything planned outdoors. Julia is feeling good, but I have a head cold and I napped in the afternoon, which is unheard of for me.

Sunday, August 13

Dr. S. emailed us early this morning and said that since we're ignoring the Aldolase result, we can go ahead and reduce Julia's Prednisone dose by 1mg, to 7mg/day. He said that even if the Aldolase reading was correct, a month at a lower dose would not make any difference.

Another gloomy day. We did some shopping and took in a movie, and just generally took it easy today.

Current Drug Dose:

Prednisone: 7mg/day

Quinacrine: 100mg/day

Folic Acid: 1mg/day

Calcium: 900mg/day

Methotrexate: 25mg/week

Wednesday, August 16

Today, we went to an amusement park, Six Flags New England. This park, located in the western part of Massachusetts, is formerly known as Riverside Park. It's certainly changed a lot since the last time we were there more than 10 years ago! Some of the rides are still familiar, though. I love roller coasters, and the new Superman Ride of Steel is one of the best I've ever been on. I went on alone; both Julia and her mom didn't want to try it. They did other things while I waited in line for over an hour. Later, Julia and I went up in The Colossus, a 150 foot monster of a ferris wheel, which provided amazing views of the park and surrounding area.

Being outside all day, we put a double thickness of sunscreen on her in the morning, and put more on every 2 hours, even though it was hazy-cloudy in the morning (it did clear up nicely in the afternoon). She also wore her Red Sox baseball cap all day to shade her face. It all worked great.

Julia is also showing a completely normal level of strength and stamina. She can scamper up stairs without incident, and was on her feet all day today and held up extremely well.

Thursday, August 17

I spent this morning finishing the installation of a basketball pole and backboard, with the help of my father-in-law. We actually started work on this project on Tuesday, when we dug a hole, set the bottom of the pole, and filled with concrete mix. Today, we assembled and installed the rest of the post and the backboard. The pole and backboard wass a Father's Day present I got this year, and I've been looking forward to having it installed. It's an excellent model, which has an adjustable backboard and rim assembly; the rim can easily be set to any height from 7'6" to a regulation 10'. The installation was a lot of hard work, but we took our time and were very careful, and it came out beautifully (and the height is exactly correct to within a quarter inch!). Here's a picture of it in action:

Julia has been looking forward to having the pole installed, too. She played in a girls' basketball league early last year and enjoyed it a lot. Sure enough, she was out there (with the rim set to 8') and was dribbling and shooting baskets with me. She needs to work on her technique, but she definitely has the strength.

Friday, August 18

Today is our long-awaited trip into Boston's Museum of Fine Arts to see their exhibit Van Gogh: Face to Face. We took the MBTA Commuter Rail, then Red Line and Green Line to get to the MFA, which is right around the corner from Children's Hospital, BTW. Julia napped on the way in because we had to get he up so early to catch the train.

We arrived at the museum just minutes before the 9:00 opening. We each rented headsets that apparently used a wireless technology to send audio on demand. Some of the paintings had audio numbers associated with them; you just enter the number and listen for detailed background about the piece or the room it's in. It worked very well, and I'm glad we rented them.

The Van Gogh exhibit itself was excellent. As its name implies, it's a collection of Van Gogh's portraits - there are no landscapes (such as Starry Night) or still lifes (like Sunflowers) in this special display. The portraits are arranged roughly chronologically, each "room" of the exhibit representing a stage in his life and career.

His early works are mostly etchings, in pencil or charcoal or other similar materials. They are rough, but some of the techniques he used in them are impressive and, we're told in the audio, innovative for their time. After that, he discovered oils and generated a series of dark images, with at best only muted color, in the style of the old Dutch masters. Soon thereafter, he discovered color, and the next room seems almost to explode to life.

He paints a series of portraits of the Roulin family, a family that befriended and housed him for a time. He also painted a large number of self-portraits. Van Gogh's use of brush stroke techniques and contrasting colors creates some incredible effects. When seen on web sites or in books, the images naturally appear flat. When seen in person, they take on an amazing three-dimensional appearance. There is truly nothing like seeing art in person.

After Van Gogh, which took over an hour, we spent most of the rest of the day exploring the rest of the Museum. We had lunch in their cafe, bought some souvenirs, and when we were done, we took the reverse subway/train ride home.

Monday, August 21

We managed to score some free tickets to a baseball game for tonight. Not the Boston Red Sox, but their minor league team, the Pawtucket Red Sox playing the Ottawa Lynx. The PawSox have a beautiful new ballpark, McCoy Stadium. What a great evening we had! The weather was perfect, the food was good and reasonably priced, and the seats had a very good view. The only downsides were that the PawSox lost the game, 6-2, and we got to the park very early to try to get an autograph of any of the players, but we were unsuccessful.

Friday, August 25

Julia & her mom, plus my sister-in-law, went up to New Hampshire to attend a Rubber Stamping show. They drove up this afternoon, and plan to stay until Saturday evening. Julia has been spending a lot of time on this new hobby with her mom, and she creates some beautiful things. Anyway, they're planning to attend some workshops to learn new stamping techniques (who knew?), and the man part of the show is the displays of the vandors from around the country. No doubt, they will come back loaded down with new stuff.

Saturday, August 26

Julia's mom reports that Julia was on her feet most of the day today at the show, and she held up very well. It's good to get that affirmation of how well Julia is doing physically.

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