End of 2006 Update

Gracey started this months round of IV's yesterday afternoon. Here's the schedule:

• Day 1 - Wednesday, 2006-12-27: Solumedrol starting about 4:50pm, ending about 6:30pm
• Day 2 - Thursday, 2006-12-28: IVIG beginning about 9am, ending about 4pm then solumedrol beginning immediately after IVIG then ending about 1.5hrs later
• Day 3 - Friday, 2006-12-29: IVIG beginning about 9am, ending about 4pm then solumedrol beginning immediately after IVIG then ending about 1.5hrs later

Terri was the nurse for this round and was able to start the IV in two tries. First effort was on the left wrist and the needle apparently passed through the vein. Second attempt was on the right wrist and was successful. The first day went well. No complications or side-effects were noted.

Before started this pulsing Gracey's rash was slightly pinked - a little more so than the previous weeks. This slight increase in rash was seen within only 2 to 3 days preceeding the pulsing. No muscle weakness has been seen. Gracey appears strong and says she feels very good. She has complained in the past three weeks of occassional "growing pains" as she puts it, generally in her upper right leg. These pains have lasted anywhere from less than an hour to most of a day. I will keep better notes on this subject but in the last three weeks I remember her complaining of the pain about 3 times.

Also important to note - on Christmas day we measured her on her growth scale in her room. She had grown about 1/4" since July 2006. We've measured in the previous months but no growth was noted. I'm guessing as the solumedrol is spaced out (doses are delivered farther apart in time) her growth will start to return.

Update -- IV's completed...

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OK... the last couple days of IV's are complete. All went well with

virtually no side-effects. On the last day (IVIG & solumedrol) Gracey started having a low-grade temp of approx. 99.1 but this is typical on IVIG days. We stayed on a 4 hour schedule throughout each night following IVIG and alternated between Children's Advil and Children's Tylenol to make sure she didn't develop a high temp or head-ache. Gracey loves the Advil (blueberry flavor) but despises the way the Tylenol tastes (I think it's bubble gum flavored).

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As the three-day IV pulsing progressed her facial rash seemed to me to become slightly sharper in definition with more distinct areas of rash. This rash, however, is not a smooth distribution of reds and purple but more specific to the typical JDM rash regions. Her fingers, elbows and knees don't seem to have any rash outbreaks this round. We'll be watching closely and will note any changes. I'm expecting this little flair in facial rash to dim over the next few days beginning about 2 to 3 days after the IV pulsing ended - so starting December 31 (Sunday) or January 1 (Monday) changes should begin to occur.

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Gracey's attitude for this IV pulsing was very good. She definitely was tired after day two (the first IVIG day). Day 2 and 3 start around 8:30am and lasted until about 5:30pm. That's a lot of hours for a little girl to be hooked to a machine! So her dulled moods on day 2 and three are expected. As soon as the IV tube was unhooked she was up and after a few minutes was smiling and bouncing around.

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I bought her some headphones to help when watching movies. While the IV's going and a movie is playing she can't always hear the movie because Mom and the nurse will talk. At first she loved the headphones but didn't use them on days 2 and 3. I think she gets so bored during the IV's that movies are't as good a distraction as listening to conversations in the room.

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Finally I wanted to include a link to a page describing the physical test Gracey undergoes during each visit to the rheumatologist called CMAS. This is the way the doctor guages muscle strength. Here is the link: http://www.rheumatology.org/sections/pediatric/cmas.pdf.

Start of Christmas Break

Today was Gracey's last day of school before Christmas. She was really excited because her class went to see Charlotte's Web at the movie theater. She had a lot of fun and will miss her friends and teachers during the Christmas break. We have many things planned during her time off. Her sister, Lauren, will be coming to visit this weekend and will stay until after Christmas. We will be visiting with family and spending Christmas day at home. We will be playing and hanging out most of the time, but we have to go shopping for the Make-A-Wish trip we will be taking in January. Gracey is already counting down the days until we leave and planning everything she will take and do on the trip. She is really excited and told us that she wants to spend the night at Jennifer's house while the rest of us stay at the hotel. I don't see that happening, but let a little girl dream.

Gracey is physically doing very well. She is not experiencing any muscle weakness. She did complain of "growing pains" the last couple of nights, but that is fairly normal for a six year old. The rash is improving and getting lighter everyday. The most evident place the rash is improving is on her nail beds. The nail beds no longer have any raised spots, but instead only the reddish pink discolor. Everyday makes me thankful and smile at how much better she is doing. God is truly healing my sweet little angel. What a great Christmas present Wes and I are getting.

First MAJOR Spacing today!!!

Well... Gracey had her checkup with Dr. Punaro today and she is officially spaced to one IV round per month (solumedrol and IVIG)! Gracey has been progressing forward and we've noticed her rash has finally started to dim over the past two weeks as well as no muscle weakness. Wow - did Gracey really work hard on the physical test!!! Her previous score was 43 out of 52. We were hoping she would be able to hold her head up this time for at least 60 seconds which would push her final score up a point. But Gracey did much better. Not only did she exceed the 60-second mark but she went a total of 78 seconds. This and a couple other improvements pushed her final score all the way to 48 out of 52!!! Sorry for all the exclamation points - but it's very exciting... The physical therapist said a little girl Gracey's age should score 49 to 50 under ideal circumstances. YEA GRACEY!!!!

As I said Gracey got her first major spacing of the IV's today. Before today Gracey got IV solumedrol every two weeks and IVIG every four weeks. Meaning every two weeks one IV medicine for three consecutive days. Every four weeks a second IV medicine, IVIG, was added on day two and three. These are the long ones - 6hrs/day for IVIG then add 1.5 hrs/day for the solumedrol. Now that the drugs have been spaced to every four weeks Gracey gets three weeks between IV pulsings. It's taken her 8 months to get this far and it is a very good sign. Her dosages were increased slightly on both IV meds (more details later) resulting from a small weight gain. Spacing the meds was a goal and a wonderful point to reach but we will be watching to see how her body and the JDM respond. This is an important phase - backing off the meds and letting her body (immune system) handle more load. Time will tell - please keep Gracey in your prayers!

Make-A-Wish Update

I got a call today from our local Make-A-Wish person, Gary, saying they heard back from the celebrity Gracey wishes to meet. Jennifer Love Hewitt said she was very excited about meeting Gracey and really looked forward to it. So far it appears we'll be heading for California sometime during the second half of January 2007. Plans will get more detailed as we get closer.

Gracey will be thrilled - we'll give her the update tonight!

We're still getting ready for Monday's checkup at Scottish Rite. Gracey has gotten very good at every physical activity. She's still having a little trouble holding her neck up but is practicing. Regardless I think she will score well on the physical test.

A good Monday

Well Gracey finished her IV last week with no negative effects. There was one error encountered Friday afternoon. The last IV is Solumedrol in 100ml saline. Somehow the bag or tubing was punctured without anyone knowing. By the time it was caught the entire volume had leaked out. Since we had no backup to replace it with Gracey's IV's were over a little early. A phone call to the doctor (Scottish Rite) let us know that since she had had two previous Solumedrol IV's during the two preceeding days missing the third day was OK.

She had a great weekend. She ate and slept well . Very happy and full of energy. After this round of IV's (and this one included the IVIG) Gracey's rash has cleared somewhat. Mellowing out in color and intensity. Even her fingertips are better than ever.

Our only anomoly was this morning when she woke up. She had a small nose bleed which ended up covering part of her face and getting on her pillow and sheets. When she saw the blood it scared her but she calmed quickly. We think the dry night air is the cause and are considering a humidifier for her room. She's had a few small nose bleeds in the past 5 months producing similar volume. This one just stood out because it got all over the bed and Gracey.

Next Monday we're in for a checkup with the rheumatologists at Scottish Rite. This is the first since starting IVIG. We are hoping she will space Gracey's meds out further and so far Gracey has continued to progress.

Link to rash pictures

Here is a link to a previous page I created while Gracey was on Plaquinel and having a very bad reaction to it. The pictures cover a time from 7/30/2006 through 8/23/2006.