Easter 2008!

Wanted to put up a picture of Gracey in her Easter dress. She's doing great and we are looking forward to the next Dr visit in April.

Doing Very Well

Tomorrow's Valentine's day and Gracey is really looking forward to it. She seems to be doing very well and had her first IVIG only pulsing on Feb. 2 & 3. This is a big deal because she's gotten regular IV doses of solumedrol (prednisone) for nearly two years! Her rash has not returned, no nail-fold capilaries viewable and muscle strength is excellent. Other than staying away from the sun she's scooting around like any other little girl.

Since coming off the solumedrol IV we've noticed pretty good growth. Since November 2007 she's grown almost a full inch. This is more than she grew during the previous year and a half. Teeth are falling out, too. Gracey loves it!!

A Milestone!

Well... it's official: no more solumedrol (IV prednisone steroid)!!!

What wonderful news. We anticipated that solumedrol would be discontinued and sure enough it was. Gracey is extremely happy! Of course everything went well at this past Friday's doctor visit. Physical and blood tests were great and the doctor continued to be impressed with Gracey's status.

Gracey will continue on a 6 week cycle of IVIG - so... the IV's are still a part of her life. But this is certainly a major accomplishment on the road to full remission. And it means 2 days of IV's instead of 3. She also continues daily doses of oral prednisone and folic acid with weekly injections of methotrexate.

I've got to tell this little story from the checkup. Gracey was feeling very good that day and wanted to show the doctors, nurses and therapists just how far she'd come since starting all these treatments. The first time Gracey was in that exam room she could barely walk, couldn't get up on her own and if laying down couldn't even raise her head. Well after the physical tests she decided to add some pushups. Not the easy kind - but proper form pushups... back and legs straight, go down till chest touches floor then up again. She did them extremely well for everyone without even breaking a sweat. All smiles!

"The Lord is my shepherd, I shall not want... ".
It's true you know!

More to come... ALWAYS

Time for a checkup

This coming Friday we head back to the doctor for a checkup. Gracey seems to be doing extremely well! Her muscles have maintained strength - she can do sit-ups like they're nothing. Her skin looks wonderful. Smooth and clear. This checkup comes with a little more anxiety than others because we are expecting the doctor to discontinue the IV steroid (solumedrol) this time. We all hope it happens but at the same time it's a scary proposition and we pray her body maintains its equilibrium...

But, for now, Christmas was great and so was new years. This is starting out to be an exceptional year for all. I'll post an update after we get back from the doctor.

Gracey in D.C !!!

This past weekend Gracey and the family were in Washington DC where Gracey ran in her first marathon - the Marine Corp Marathon Kids 1-mile Fun Run! We loved the trip and the opportunity to meet so many others. Gracey had a ball!!!



More to come...

Good News from the Doctor

This past Monday was Gracey's 4 month checkup and it was a good one! Her muscles have maintained full strength now for almost 8 months and the rash is pretty much gone. Since she has maintained such a solid recovery the doctor agreed it is time to space her IV's out from 5 to 6 weeks. Furthermore we return for a checkup in January and if Gracey is still doing this well we will discontinue IV solumedrol (steroid). WOW! That's what we really want to get her off of as soon as possible due to the nasty side effects. Gracey will likely continue IVIG pulsings a few months after but IVIG is not nearly as hard on her as the steroid. So it's entirely possible Gracey could be off all IV's by summer 2008.

Her physical test (CMOS) went well and she scored a perfect score for the third straight visit. Her labs came back good and as mentioned the rash is non-existant. The only serious warning given to us by the doctor before we left was to make sure she does not get a sunburn. Such a thing could set Gracey back to day 1. Not gonna be a problem for us - we carry a couple extra gallons of sunscreen everywhere we go!

Next month is the Marine Corp Marathon in DC - October 27th. Gracey plans on running a mile and is practicing regularly. Her strength is awesome and I don't think she'll have any problems that day. I might have a problem keeping up with her though...

Update!!! (finally)

It's about time I got on here and gave everyone an update. I apologize for taking so long. We've all been very busy but it's no excuse - if you have time to read I should make the time to write. I'll promise to try and do better.

Gracey started first grade this past Monday. She's had her bag packed three weeks prior and couldn't wait till the day came. And that day went very well. She has all the same friends in class from last year, a new teacher and new room. She can even look out her window and see Daddy's bank! Lucky her...

Physically she continues to do very well. We've seen no muscle weakness or issues since the last doctors visit. For that matter her strength seems to have maxed out about 4 months ago allowing her to score the maximum on the physical test. I think her rash is 98% gone. Her facial color is very good and we've even had a slight switchback to the "old days" when we needed to keep her skin moist or risk exzema outbreaks. I might be seeing only the slightest remnants of papules on her knuckles and finger joints - but it might be my imagination. They look extremely good. We go back for a checkup with the rheumy the end of September so will know more then.

We continue to apply large amounts of SPF50 daily and Gracey now does this as a natural part of her day. The school once again was very receptive to Gracey's needs and are making every effort to accomodate her. I think this year will be even better than last year!

Gracey is looking forward to the trip to DC later in October. She is practicing for her 1 mile run and doing terrific with it. I think the trip will be great for us all!

By the way... Gracey still emails Jennifer Love Hewitt regularly. They talk a couple times a month and discuss the TV show. JLH really turned out to be a great person for Gracey.

Latest Check Up

Gracey had a check up on June 4th and we received amazing news!! For the first time since Gracey was diagnosed, she scored a perfect score (52) on the CMAS (Childhood Myositis Assessment Scale). This is almost unheard of at her young age. We were told that typically a six year old will max out at approximately 49-50 due to certain sit ups that must be done without counter balance. We attribute Gracey's score to her determination and prayers.

Gracey also had a pelvic MRI to determine how much muscle inflammation still existed. The radiologist stated that on first glance the MRI appeared "normal". After comparing the new MRI to last year's MRI, the radiologist determined that Gracey's muscles have little to no inflammation. This was great news because it shows how well Gracey has responded to the medicines.

The rheumatologist was very pleased with Gracey's progress. The doctor said something on this visit that she had never said before: monocyclic!! Monocyclic means a single occurrence of the disease resulting in remission without future flair ups. The doctor said that Gracey was looking very well and that she was responding to the medicine extremely well. The doctor did not guarantee anything, but said that Gracey's case of JDM could be monocyclic! This was the best news that we have gotten to date.

Gracey will remain on her IVs every four weeks, but the doctor told us that if Wes and I see improvement in the rash on her face, then she will space Gracey's IVs to every five weeks. The doctor is anxious to get Gracey off of the steroids as soon as possible, but not to the detriment of Gracey. We are taking things slowly to ensure no set backs!

Kindergarten Graduation Picture Day

Today is the last day of Gracey's May, 3-day IV pulsing. She is doing extremely well through this round. Her rash has remained very mild and almost non-existant. The worst part, as reported by Gracey, is getting the IV started and the long 8 hour days hooked to the IV pump. But today is her favorite. After the IV is over everything is removed and she's off to play for another month... maybe longer if the doctor spaces her meds. We'll keep you updated on that.

Today her kindergarten class is having their graduation pictures. So that we don't miss them I am getting Gracey ready to go up this morning. We'll pop in, get the picture made then head back to finish the IV. Her school is wonderful and works with is any way possible to accomodate our odd schedule.

Happy Graduation, Gracey!!!

Continued progress...

Next week is an IV week followed by another checkup with the rheumatologist (sometime in early June). Gracey has continued to progress with good, strong muscles and increased flexibility.

She still has a very mild pinkish tone on her cheeks - but it's very minor, nothing compared to last year. The intensity does change based on the weather (cold, hot, dry, humid,...) or her physical temperature (crying, running, moderate physical activities). She also exhibits what seems to be typical for JDM children a slight flare up of the rash on her face just a few days before getting her scheduled IV's.

I have been checking her nail beds every week for the little blood vessels you see in a JDM child. Currently I can no longer find any. Of course, this is me looking but historically I've had no problem seeing the vessels. But now they're gone. I hope this is yet another good sign that her JDM is moving in the direction of remission.

Growth seems to really be kicking back in! In January we measured about 1/8th inch of growth. Not much but it was something. Upon measuring her this past Wednesday (5/9/2007) she was a full 1/4 inch taller than in January. She is also finally starting to get a loose tooth. Both of these events are a welcome sight. The prednisone has slowly been tapered down since November 2006 so to me these are signs her body is starting to take control again.

Kindergarten graduation is in two weeks and she is very excited. We've met her first grade teacher and she is a wondeful lady. We are very thankful for the school Gracey attends. It is a private school with a good number of students - but not too big. They have really taken care of Gracey this past school year and helped us (the parents) feel comfortable about leaving her there each day.

But, more than anything, I am extremely proud of Gracey. Yea, Gracey!!!

Gracey is doing great !!!

I am sorry it's been so long since I've updated. But... Gracey appears to be doing extremely well! We completed April's IV a week ago and she did great with it. Her rash continues to improve at a steady rate. Specifically she still exhibits some redness on her cheeks and just a little on her knuckles and finger joints. That rash tended to slightly flare up just before IV time. But we've noticed the last two rounds of IV's the rash has only flared slightly. We are hopeful she is slowly and surely making progress.

Update - March 2, 2007

Just wanted to give an update on Gracey this week. She's doing very well and has had a great week at school. The weather has been nice so we've been outside more than usual. Will maybe go fishing this weekend - Gracey really wants to.

We go to the ped. opthalmologist this next Tuesday so I'll let you know how it goes...

A GREAT month but now... Cataracts :(

The past few weeks have went fairly well. After the last IV round Gracey came down with a stomach virus that took her about 4 days to get over. Once over it, though, she has had a really great month! A couple minor bumps where she seemed to maybe be getting sick but nothing developed and she's running and happy.

Today was her followup with the ophthalmologist to check for glaucoma and cataracts as well as create some base-line pictures of her eye from which to compare with on future checkups. Unfortunately at the end of the exam the doctor stated he did see very tiny, faint cataracts forming evenly in both of Gracey's eyes. He rated them for me using a scale from 0 (perfectly clear) to 5 (completely cloudy) placing Gracey's cataracts at a 0.5. They currently do not affect her vision and the important variable he could not describe today was the rate the cataracts are growing. We will follow up with appointments every three months (I may change them to two months) to help determine the growth rate.

Of course Gracey just smiled! After we left the doctors office I explained (as best I could understand) what a cataract is and what it could do. I could tell she was thinking and taking it all in. Finally she said she would rather have to wear glasses than not be able to walk and she was glad we have the IV medicine (which is what caused the cataracts). She's very brave and has such a solid faith in Jesus and God. She even says it's OK if life is hard - Jesus loves her so much.

I'm going to start my reading process and learn as much as I can about cataracts. Your prayers are requested... More to come.

Sick days after IV

The January IV's finished up this past Saturday but unfortunately Gracey started getting a little sick at the end. Apparently she came down with a stomach virus (or something similar) on Friday and therefore had a rough weekend. Her temp initially rose to around 100 but by Sunday afternoon through Monday evening it spiked at about 104. She started getting somewhat dehydrated but on Monday was able to hold down Gatorade. Besides the bad stomach aches she said the second worst part was a fairly serious nose bleed.

I took her to see the pediatrician Monday and he confirmed she did not have the flu. No flu. The infection appeared to be viral so she just had to ride it out.

Today is Wednesday and Gracey is back in school. She said she would much rather be in school than go through that again. She's much better now and February should be very good.

January IV

We're back from the trip and starting to get back to normal. We got back in Dallas about 8pm Wednesday night then home by 10pm. At 8am the next morning, however, the nurse was here to start this months IV pulsing. Gracey was tired but in a good mood. It took three sticks this time to get started and these seemed to hurt a little more than before. Once in, though, the IV went as planned: Solumedrol for an hour and a half then about seven hours of IVIG. She did great with no bad side effects other than getting tired (no energy). She did start running a low temp on day two and later started getting an upset stomach but these were experienced during previous IVIG/Solumedrol pulsings. Since she just got back from meeting Jennifer Love Hewitt she spent all day Thursday and Friday watching every Hewitt movie we could find (kid appropriate, of course). She also took the opportunity to finish the last of her homework. Gracey is extremely serious about getting ALL of her homework done! :) The picture to the right shows Gracey before the IV with saran wrap covering numbing cream on both of her lower arms. We do this because we never know where the best vein will be so we prepare a larger area giving more options.

Methotrexate injection was also last night. Since we started numbing the skin on her arm she hardly even feels the injection. This one went well.

We were supposed to head into Ft. Worth today for a gathering of several JDM families but Gracey got a little sick last night and this morning threw up a couple times. After the IV was over and removed she started feeling much better but her stomach was still somewhat upset. She was very disappointed to miss meeting the other kids - but there will be other times.

Her rash flared up about three weeks ago but there appears to have been no muscle involvement. Currently the rash is still visable (in the JDM butterfly pattern) but it is dimming considerable. We go back to the ped. rheumatologist in a week and I expect Gracey will look even better while there.

This last picture was just after getting the IV started. Gracey likes to sit in mommy's lap while starting the IV. She's always very brave!

The Make-A-Wish Trip

After much anticipation Gracey finally got to pack her bags and off she went! Starting Saturday, Jan. 20th the trip was on... and Gracey was feeling great. We've watched closely as the day approached making sure she wasn't getting sick and her JDM was in check. The recent rash flare-up turned out to be (thus far) just a rash - no muscle involvement. Gracey also got a secondary wish in that the facial rash has dimmed dramatically from its peak. She was really hoping to not have such a bad rash when she meets Jennifer Love Hewitt.


Before leaving on the trip, however, Make-A-Wish threw Gracey a little "send off" party on Friday at her school and invited her whole kindergarten class. All the kids got cake and cookies. Gracey got a travel-pack full of activities for the trip. Our local newspaper was also there to cover the event and we're told the story and Gracey's picture will be in the Monday edition. The party was a sweet thing for them to do. It made Gracey feel very special!

Another "special feeling" hit her when we arrived at the hotel at DFW airport. The room was reserved under Gracey's name so she was the one who had to sign for it. I held her up to the counter and she proudly wrote out her name then very seriously said to the clerk, "... let me know if you need any more things signed." She was SO proud of herself. Up in the room she assigned beds to all then we ordered Gracey's first room service. She was quite impressed with the whole deal.

The flights to L.A. the next morning were good. We were all a little tired when we landed but Gracey's face completely lit up after we got off the plane and she saw a person holding a sign with "GRACEY" in big letters and a huge Winnie-the-Pooh balloon. Make-A-Wish provided a person to help us get our car and over to the hotel. I'm especially thankful for the escort to the hotel. Without it I would have surely gotten lost a couple times. After getting settled into the hotel we took the shuttle to Universal City Walk to get something to eat then the girls did a little shopping.

That first day in L.A. was tiring so I figured after the eating/shopping everyone would like to settle in for the night. Wrong. As soon as we got back to the hotel Gracey wanted everyone to go to the excercise room and work out. All the girls changed but unfortunately old daddy couldn't make it. Gracey said she found three things she could do and let everyone know she plans on going every day she's here.

And now... we come to Monday morning. I'm up about 5am in the hotel lobby trying to remember everything to write. It's 6:40am, my coffee's almost gone and the girls will be up soon. I'll take a lot of pictures today and tomorrow and make sure we post some here. Today is likely going to be Universal Theme Park and maybe later we can go to the "Walk of Stars".

Monday's Highlights...
We got off to a good start this morning. The girls slept in late and daddy was up by 5am (typical). After a good breakfast we made our way to Universal Studios Theme Park. There were tickets waiting at the gate and in we went! Immediately Gracey saw the Marilyn Monroe character and had to get her picture made. Then on to Shrek and Fiona for more pictures.

The first stop after pictures was the Universal Animal Actors Show. This was our first experience with priority passes we were given. We were ushered past down to the front row and Gracey was told she could pick any location in the front she chooses. Also she was invited to stay after the show and get a special backstage tour where she got to meet Lassie!!!

From there we saw several shows and roda a few rides. I asked her what her favorite things were on that day and she said the Back to the Future ride (scared me) and the Studio Tour ride. Gracey is pretty sure she saw Jennifer Love Hewitt for just a second while on the tour which just made her day. There was so much to see and do! By the end of the day I was getting a little tired but the girls chose to do a little souvenir shopping then eat at the Hard Rock Cafe. Gracey found several items and was ready to head to the hotel for the night.

So... now I'm up to the morning of Tuesday - meet Ms. Hewitt day. Everyone's getting ready for the 12pm meeting. From what we gather a limo will arrive at 11:30 to take Gracey to the studio where she'll get to go on the set of Ghost Whisperer and spend a few hours with Ms. Hewitt. That'll have to do for now. I'll take pictures while there and plan to write it all down after we get back.

To the studio!!!

Ms. Hewitt snuck in to suprise Gracey! Gracey was SO excited... she couldn't stop smiling!
Thank you, Love!!!

As you can see from the pictures Gracey finally got to meet Jennifer Love Hewitt. She started off touring the antique store (Gracey's favorite - and the crew was actually shooting a scene for the show). Gracey was all smiles and stayed very quiet and she was handed a wireless headset allowing her to hear the actors talk and it was filmed. At the end of that scene which included Camryn Manheim and David Conrad, Ms. Manheim came over to say hi to Gracey. Next we walked to another set which was the Melinda's (Ms. Hewitt's character) house. She posed for pictures in each room, downstairs and up, then grabbed the camera herself and took a few shots.

Next stop was a set built specifically for the show and it might have been a little spooky - a morgue. But, Gracey was still all smiles and she said I shouldn't be a scaredy cat. We got there just before the scene started shooting so Gracey saw a lot of activity as the crew hung lights, moved cameras and equipment. Then as Gracey was eating a bag of fritos Jennifer Love Hewitt appeared and quietly came up next to her. That was it for the fritos - the bag went down and her arms went up for hugs! From this point on Gracey started smiling and absolutely could not stop! Ms. Hewitt sat with Gracey for several minutes but then needed to go on the set for a rehearsal. Gracey was absolutely overwhelmed when Ms. Hewitt asked her to come up and stand with her while the actors rehearsed. The family stayed back behind the directors monitors and we all could see little Gracey's head just peaking above a table on the set. Then we heard "...she needs an apple box so we can see her.", "...bring in the apple box". A person brought a box over and Gracey stood up on it. The cameras instantly focused on her little face - everyone clapped. Now it was time for the scene to start so the director asked Gracey to yell "Action!" when he was ready. Her voice didn't fail as she yelled the command right on queue. Throughout the scene Gracey stood next to Ms. Hewitt and between lines they joked and laughed. Also in the scene were David Conrad (Melinda's husband) and Curtis Armstrong. When the scene was over Gracey then yelled "Cut!".

Afterward it was lunch for the crew but Ms. Hewitt spent most of hers with Gracey. They both sat in chairs and talked while dad took a few pictures. Ms. Hewitt signed some posters for Gracey and a few copies of the script for the episode they were shooting. As stated earlier Gracey was overwhelmed and said, "... this is just the best day of my life!".

Eventually Ms. Hewitt had to go get ready for the next scene they were shooting. More hugs and a few more pictures then she was off. But it wasn't over for Gracey. Our guide asked Gracey what she wanted to do next so Gracey asked to see the antique store again then if she could see the park area from the TV show. We walked back to the antique store set which was dark but a few lamps were on. More pictures and a couple circles through the set then we went over to the park and got a full tour of the area. Gracey ran and played and basically was allowed to do what she wanted for as long as she wanted. She was the boss!

After a total of 4 hours on the Ghost Whisperer set Gracey's limo arrived to take us to the hotel. She was so wound up from all the excitement it was hard to get her to sit in her seat! She had a marvelous time - much more than she expected to see and do. Make-A-Wish and Ghost Whisperer worked together to truly make a little girls wish come true!!! We will never be able to thank them adequately...

It got icey here!

Brrrrrrr.... it's cold! Cold for Texas, that is. Over the past three days the temperature has dropped to just below freezing and stayed there the whole time. Some ice is on the ground and schools closed for a day but it is expected to pass by tomorrow. This picture was taken before the cold set in, of course. Gracey loves playing on the "Red Curly Slide"!

Well, Gracey has steadily improved since the last IV pulsing in late December. She had a definite flare-up with the facial rash (typical JDM pattern) but it is finally subsiding. Even though she never complains I can tell it bothers her to go to school with a red face. But, like I said, she doesn't complain and just smiles! Her muscle strength appeared (to me) to have went down very, very slightly about three weeks ago but I think now the strength has returned.

Gracey has been exceptionally happy the past two weeks. She wasn't unhappy before - but now she just seems to be unusually happy. She is definitely excited about her Make-A-Wish trip coming up next week and can't wait to meet Jennifer Love Hewitt. In fact, her favorite movie is now "The Audrey Hepburn Story" which she watches each night while laying in bed then falls asleep.
OK... Gracey wanted to write a message to Ms Hewitt just in case she reads this:

I've been looking forward to meeting you. I got my hair cut today for the trip and they gave me some hair gel so I won't get the frizzies because I might get the frizzies when I'm outside. I am excited to meet you and talk to you and ask you questions. My silly sisters will be there but we can ignore them if you want :) I want to meet you because you are a nice person and you are a very good actress. Love Gracey :)

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...

-

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.

IVIG Today

Yesterday (Wednesday) was the start of another 3-day IV pulsing. This round also included two days of IVIG starting Thursday (6hrs per IVIG and 1.5 hrs of solumedrol). Starting the IV was a little difficult again. Took three sticks this time and we ended up moving up the same vein on her right arm. The left arm has proven difficult to use and we have yet to start on in that forearm. Also - her temp was 100.3 at the time we started the solumedrol IV but by the time the IV was over her temp was normal. No BP issues - all within normal range. She slept well and woke up the next day in a great mood. Morning temps normal. I'm about to go home for lunch and take her french fries and gravey... Will write more this afternoon.

Gracey is having a good day. She attacked her french fries then got a little sleepy. The IV is going well with no headaches. So far so good. Rash on right wrist seems to be fading with the new cream prescribed Tuesday. We are starting to be a little concerned with her veins and their ability to hold up to multiple IV's in the coming months. So far the last 4 IV sessions have required 3 to 5 attempts before success. The next Dr.'s visit is 12/11 and we will start asking about a port and what to look for in deciding whether or not to install one.