Gracey's World

Update... finally (again) :)

noreply@blogger.com (Wes) — Mon, 04 Jan 2010 12:54:00 +0000

Over the weekend Jan reminded me how I haven't posted anything here in quite a while. Once again, I'm sorry. So here's a little update.

Gracey's now 9 years old and doing beautifully. No IV's for over a year and her daily prednisone has steadily tapered - she should be off it alltogether within 6 months. Her immune is holding steady. No flares at all since things came under control which was around late 2007. And... her skin is perfect! Wow, it's such an amazing thing to look at her face and see her perfect little cheekers, all smooth and creamy. She's just beautiful!

Here's a shot of her from January 3, 2010.

Currently, Gracey has been a student in a local dance school for a couple years now. She's in the advanced group with several girls a few years older than her. Her strength is perfect! And flexibility is wonderful - she can almost do the complete splits. All of her checkups with the ped. rheum. are uneventful. Her CMOS scores are always maxed out, no signs of rash, papules, or even calcinosis - nothing - and for almost two years now.

We are so proud of her. Anyone reading this whose child is suffering from JDM please keep your hope and faith. Many times that's all that gets you through. There is always a light at the end of the tunnel!

Pediatric Dermatologist Visit

noreply@blogger.com (Wes) — Tue, 10 Feb 2009 19:01:00 +0000

As recommended by Gracey's rheumatologist, wee finally got to see a specialist about the newly formed rash on her face. This past Thursday we saw Dr. Melissa Costner for an evaluation. After meeting us and hearing of Gracey's history (short and long term) then looking over Gracey's rash Dr. Costner was very positive about what was going on here. She felt that Gracey is doing very well at this point and does not believe she is relapsing and would require IV treatments. Dr. Costner explained that the rash we initially saw, and continued to see up intil the day of the visit, was typically caused by yeast that is present in all human nostrils. For some reason in JDM children this can cause a small rash around the edges of the nostrils that can spread across the face. JDM kids are more prone to such an occurrance than non-JDM children. Since topical treatments were controlling the rash, and no other JDM symptoms were occurring, Dr. Costner felt Gracey was holding her own and not relapsing. Before we left the doctor prescribed a slightly stronger topical than we'd been using, called Elidel.

As of today, February the 10th (5 days since the visit), Gracey's face is almost perfectly clear. The yeast rash is gone, and the widespread, subtle JDM rash is almost impossible to see. So... for the time being it seems all of this was just a rash and nothing more. But, we will continue to monitor her skin and stay proactive on infections.

And of all the things to happen after this... this past Friday I took Gracey to her pediatrician because she didn't feel too good (slight headache and fever, soar throat). She had the flu! But luckily her case was mild (yes, she did have a flu shot) and she felt none of the all-over-the-body pain normally associated with flu. He prescribed Tamiflu and a decongestant. She is feeling wonderful now and has all her energy.

A better day

noreply@blogger.com (Wes) — Fri, 30 Jan 2009 21:49:00 +0000

Gracey's rash has slowly been dimming since it was first reported. It was at its worst on the day we went to see the rheumatologist. A week and a half later her skin is almost perfect. She has slight redness left over from the episode, but this is dimming daily.

On Wednesday, January 28th we were scheduled to see a pediatric dermatologists for a second opinion. But... Texas weather being what it is... the doctors office was closed due to an ice storm that moved in the previous evening. Good thing, too, cause when I woke up at 5am to check roads I decided quickly that there was no way we were driving through Dallas traffic in that mess. So, the appointment was cancelled. As of today it is rescheduled for Thursday, February 5th. I hope we show up in the doctors office and she sees no rash at all.

On a side note, Gracey has her first spelling bee tomorrow morning. We're all excited and looking forward to going. She's studied every night for the past two weeks. I'll get some pictures and let you know how it goes. W

Rash changes

noreply@blogger.com (Wes) — Mon, 26 Jan 2009 13:14:00 +0000

Gracey's rash has steadily declined from the deep red/purplish splotches to a smooth, reddish discoloration across her face. The intensity has dwindled so much most adults wouldn't even notice much unless they really looked. But... the rash is there. And it is following the pattern typical of JDM children known as the butterfly pattern. We are so happy the rash is diminishing, however we are being forced to accept that the bulk of this round of rashes was caused by JDM. We'll have a better idea of her status after this Wednesday's visit with the dermatologist.

I'm paying extra attention to her muscles and flexor areas for signs of JDM activity. None so far. Please say a prayer for Gracey. The Lord listens, and is already working to help us.

Rash Trouble...

noreply@blogger.com (Wes) — Sun, 25 Jan 2009 14:47:00 +0000

On January 19, 2009 Gracey went in for her regular checkup with the rheumatologist. Unfortunately a week earlier Gracey developed a small rash on both sides of the base of her nose. Very minor, hardly noticable. Our pediatrician looked at it and felt if was a fungal rash and directed us to use a topical cream to handle it. The treatment wasn't exactly what he would use but due to Gracey's other meds (oral Prednisone and methotrexate) this was a safe start. And... he knew we were visiting the rheumy in a few days. Well, the topical treatment just wasn't strong enough and two days before visiting the rheumatologist the rash got worse. By the time the rheumy walked in on Monday morning Gracey's cheeks were rad and looked somewhat like a typical JDM rash.

We were already conderned this could be the beginning of a flare. Hopefully not, but we didn't know for sure if the rash was fungal, nor did we know if it was JDM. Well, the rheumatologist didn't know for sure either. But her hesitation was only out of caution for the prospect of a flare. The rash could be fungal, but this fungal rash was on the outer surface of the skin. It did not explain the deep rash covering much of Gracey's face at the time. JDM could explain that aspect, though.

We were nervous we were going to hear "... go back on IV's again". But instead the doctor appeared concerned and referred us to a pediatric dermatologist that specialized in rheumatic disorders. She wants to get this second opinion to see if the rash really is minor and can be dealt with through less intense methods other than IV's. In this case Gracey would have had to go back on IVIG. Although IV's are a real possibility for Gracey within the next month, there's a chance IV's can be avoided for now.

So we have an appointment with this new specialist on Wednesday, January 28th. From there we will actually have a third opinion about her rash and can better decide the next step.

I should have mentioned up front, but other than this recent rash, Gracey is doing great! No muscle issues, no sickness. Wonderful, wonderful! In fact as of writing this today the rash in question has almost disappeared! Makes me wonder if her last rheumatologists appt were a week later or a week earlier what the outcome would have been. But... we are all looking forward to going to this new dermatologist. Gracey has always had eczema and dry skin so going to such a qualified specialist will be very beneficial.

I'll let you know how this all turns out. It's got us all ttied up in knots. Even Gracey is worried. I've been focusing extra attention on her rash and health to the point of dropping a few of the dozen balls I juggle on a daily basis. :) But as long as Gracey is OK then I'm OK, we are OK.

One more little detail about the little sweety... Her report card came out this week and she got all A+'s. Excellent work!!! She was very, very proud of herself. (I was too).

More soon...

Happy, Happy Day!

noreply@blogger.com (Wes) — Tue, 21 Oct 2008 18:48:00 +0000

On October 20, 2008 at a regular checkup with Gracey's rheumatologist it was decided and happily agreed that the time has come to stop all IV's. Gracey is officially off IV medicines!!! She danced in the exam room from the excitement.

Her body has done very well in maintaining itself as the meds were spaced. The IV she is getting off of is IVIG in which she got 40 grams over two days. Her skin is perfect - not even showing the redness we had gotten used to. Her nail bed capillaries are normal, the gotran's papules (sp?) have completely dissappeared, and her knees and elbows are normal color. No muscle weakness at all.

This is certainly a big deal and Gracey considers it a birthday present. Her birthday is the end of this month - she'll be 8. Three years ago to the day is when she came down with an upper respiratory infection which might have been the trigger to set her immune system off on this wild ride. Three years... wow. It goes by so fast. But I have to admit the last 3 years have seemed like 10 years.

Thank you all for your prayers and support. I ask that you keep Gracey in your prayers as the disease will always be there. But I know she will be fine and we will all work to keep her safe. And Jesus is always with her - no matter what.

Update - August 2008

noreply@blogger.com (Wes) — Fri, 01 Aug 2008 20:57:00 +0000

I must apologize to all for not updating you more often. Although things have been very busy the last few months I should have provided a little information. Thank you for reading and I will work to post information more often.

Gracey is doing great! In fact she went for a checkup this past Wednesday. The doctor was very pleased and noted Gracey's improvement has remained on track for over a year now. She's maintained good muscle strength with no rash long enough the IVIG infusion was moved out to 8 weeks (from 6 weeks).

We were all excited to hear it. But what was even more exciting was to hear the doctor say that after the next two infusions if Gracey still remained this good she might try stopping the IV's all together! WOW!!! What started at 52 infusions per year has dwindled to 6 per year with an end finally in sight. Wow! Thank you Jesus!!!

More good news to report... Gracey is on her way this Sunday to a week long camp sponsered by Scottish Rite Hospital. The camp is for children with forms of arthritis and held yearly at Camp John Marc. Gracey's cabin has about 8 little girls, all the same age and all but one have never been to camp. There is even another little JDM girl. Gracey has been planning for the camp over the past few months and is so excited it's finally here. This past week was spent getting a new sleeping bag and other things needed for her trip. I worry that she will miss her daddy, though, and have offered to camp out at the entrance of the place... just to help her feel more comfortable. But she smiles and says it'll be OK :) ... don't worry daddy.

Easter 2008!

noreply@blogger.com (Wes) — Mon, 24 Mar 2008 18:11:00 +0000

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

noreply@blogger.com (Wes) — Wed, 13 Feb 2008 21:53:00 +0000

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!

noreply@blogger.com (Wes) — Sun, 06 Jan 2008 23:46:00 +0000

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

noreply@blogger.com (Wes) — Wed, 02 Jan 2008 00:47:00 +0000

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 !!!

noreply@blogger.com (Wes) — Thu, 01 Nov 2007 12:31:00 +0000

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

noreply@blogger.com (Wes) — Wed, 26 Sep 2007 19:02:00 +0000

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)

noreply@blogger.com (Wes) — Wed, 29 Aug 2007 16:46:00 +0000

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

noreply@blogger.com (Jan (Gracey's Mom)) — Tue, 26 Jun 2007 18:31:00 +0000

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

noreply@blogger.com (Wes) — Fri, 18 May 2007 12:37:00 +0000

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...

noreply@blogger.com (Wes) — Sat, 12 May 2007 13:37:00 +0000

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 !!!

noreply@blogger.com (Wes) — Fri, 27 Apr 2007 20:11:00 +0000

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

noreply@blogger.com (Wes) — Fri, 02 Mar 2007 13:36:00 +0000

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 :(

noreply@blogger.com (Wes) — Mon, 19 Feb 2007 21:12:00 +0000

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

noreply@blogger.com (Wes) — Wed, 31 Jan 2007 20:07:00 +0000

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

noreply@blogger.com (Wes) — Sat, 27 Jan 2007 20:26:00 +0000

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

noreply@blogger.com (Wes) — Mon, 22 Jan 2007 14:16:00 +0000

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!

noreply@blogger.com (Wes) — Wed, 17 Jan 2007 20:05:00 +0000

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

noreply@blogger.com (Wes) — Thu, 28 Dec 2006 15:22:00 +0000

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).

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.

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.

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.

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.