Wednesday, January 31, 2007

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.

Saturday, January 27, 2007

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!

Monday, January 22, 2007

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...

Wednesday, January 17, 2007

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 :)