Monday, June 30, 2008

She is making me nervous!

Madeline is making me a little nervous. We went to Walmart yesterday and she complained about her hip joint bothering her. She complained Friday about it too, but she is learning a new dance and some of the movements involved "odd" positioning. She even did some limping while we were shopping, but then a minute later, she didn't limp at all. I'm confused.

In my mind I know the movement they were doing in the dance would even bother my hips (really my entire body), but I can't quit my mind from worrying that it is the JDM creeping up on us. I'm going to begin documenting to see if we have a pattern going on.

Sunday, June 29, 2008

Creeping Crud/Advice needed

Madeline looks great. Her face rash is 90 % gone this weekend. I say this weekend, because I have learned what one day or span of days doesn't mean forever. My dad always called his rheumatoid arthritis the "creeping crud", now I know exactly what he means. One week her elbows can look terrible. Her face can look good. And her knees are completely clear. Then we wake up and she's as red as ever and her elbows are calmed down. Good analogy, daddy...the creeping crud.

We had another issue with children picking on Madeline. This is a tough one for her. On her last day of art camp they had an "art show". I noticed a little boy kept coming up to her saying something and she kept walking away. I finally asked her what was going on and she told me they went outside to look at the river so she put her hood over her head so she would be blocked from the sun. That little boy began calling her vampire. She always tries to explain to kids that she has a disease, etc. but it never works. They don't understand. It's very hard to not want to knock those kids in the head, but of course, they know no better. If you have any advice on this matter, I'd love to hear your thoughts. This is a tough one we've had to deal with.

In the long run, Miss Madeline is going to be a STRONG woman. Those "kids" better watch out. :)

Friday, June 27, 2008

She was brave

We had a full day today. Madeline had her last day of art camp. I've attached several pictures for you to review her fabulous art. Of course, Madeline has to pose for every shot. After the "art show", I let Madeline know we were going to the hospital to have her blood drawn. She took it fine (I am constantly amazed how well she handles things) and off we went.

We went up to my office first since I needed to finalize a few things. She loved that. My office is like a play house for her. She loves coming there, plus all of my employees are always so nice to her. Then off to the outpatient center we went. We got right in and Ms. Tammy processed our paperwork and them prepared Madeline. Madeline has some "juicy" veins so she had no problem sticking her. Madeline only cringed a very small amount. She was brave.

After the big event, I surprised with going to see Wall-E. Aunt Ashlee brought Trey to meet us and off we went to the movies.

Now, we just have to wait for the results. Once I know, I will let you know.
Happy Friday!

Pics of us...

Madeline thought this was funny. This was at Lulu Buffet's restaurant.
Beautiful Madeline
Are we fishing or posing???

Trey & Madeline catching sand crabs in Florida.
Her first horse ride: Madeline, Dalmatian & Aunt Holly in Lafayette.
Trey & Madeline in the front yard. Easter 2008
Easter: See, Trey does show that he loves her sometimes.
Madeline & Lulu at dance competition in Mobile, AL.
Madeline and her 30+ closest friends.
Madeline w/ Johnny Bench
On Ducote Island - Dad caught this speckled trout.

Pictures of Madeline's blisters in palm of hands

 it's worst.

Thursday, June 26, 2008

Bribery can be a good thing

Madeline had a full day today. First, art camp w/ cousin Sarah. Second, she went with Aunt Christina to her classroom and played school. And third, danced for three hours. Madeline is on her competition team for dance and the parents got a sneak peek tonight of one of their new dances for the 2008-2009 competitions. They are dancing to "9 to 5". Of course, they've never heard this song before...but should be cute.

Madeline's flexibility is once again back. I guess the break between end of school year dance and summer classes she really tightened up. After dance tonight she was once again kicking those high kicks. I asked her if she felt like she was getting looser and she commented back to me "more and more each week". Wonderful.

We voted tonight where we want to compete/perform this year. I voted first to dance at Disney World, then I voted to attend a National Dance Competition (UDA) and last to dance on a cruise ship. I guess we are going somewhere - will keep you posted once the tallies are completed.

We go tomorrow to have blood drawn. Madeline doesn't know yet. We have her art show tomorrow at 11:30 a.m. and right after plan to get her blood drawn. Will let you know how that goes. I guess we'll be buying some kind of prize. I have no problems with bribery. :)

Wednesday, June 25, 2008

Our doctor is WONDERFUL

As I mentioned in my last post, we are preparing for Madeline's blood work. I called Monday and spoke to Dr. W's office staff and asked what we needed to do to get this accomplished. I mentioned to them that Monday would be a good day for us to do the bloodwork, so she said she'd call me back and let me know once the order was sent to our pediatrician. Dr. W was out of the office and would be back on Wednesday.

Low and behold - Dr. W called me today - himself! I may of mentioned this before, but I work in healthcare...this is not the norm. This man is special. I am so appreciative of his time. I know it is his job...but with him it makes me realize it's also his mission. He never leaves a conversation without providing me a "pep talk", which I often need. ;) He is sending the now just to prepare Princess Madeline.

What I thought was the JDM rash is looking odd to me now. It is a rash that extends from her nasal openings to the ridge of her nose. I've also noticed spots on her chin. They appear as small pimples, not the JDM rash. I mentioned this to Dr. W. She has no other we will watch her. If it gets worse, we'll see Dr. M, our pediatrician.

Another great day at pointe yesterday. Now we just have to sew on her ribbons...we may need Mamaw Hawthorne to help us on that one. ;)

Monday, June 23, 2008

Clay, pimples, hair and blood - got your attention?

Madeline is going to art camp this week. She can't go off to camp due to her illness and her brother Trey is going to the LSU baseball camp, so this is the next best thing. She had a great time on her first day. Her cousin Sarah is going with her, which she loves. They made clay ladybugs, snakes, people, and bugs today. Can't wait to see what they bring home Friday.

I jinxed myself last week mentioning how good Madeline looked. All of a sudden her rash is coming back on her chest and neck. She also has on the ridge of her nose (both sides) a raised rash. It almost appears as if she is trying to break out with pimples, which makes no sense.

Another thing I want to make mention of, that is always on my mind lately, is her gain of extra hair...yes, that is She is a fuzzy little gal lately. I believe this is a side effect of her cyclosporine. She is only 9 so can't shave yet. Her eyebrows are also shooting out everywhere. But the part that shocks me the most is her back. Poor baby girl. At least she's not 13 having to deal with this.

Blood work...since our doctor is located in another state, he has to send an order to our pediatrician who then writes the order for the tests. This is our first time to do that, so I had to call their office today and set that up. I'm thinking to do these test next Monday since Madeline dances on Tuesday and Thursday. I don't want her test (specifically CPK, muscle enzyme) to be raised just because of her three hours of dance class. We will keep you posted.

Saturday, June 21, 2008

Miss Louisiana 2020

Madeline woke up this morning with a very sore throat. She continues to do this each morning and says her mouth and throat are very, very dry. She has to get something to drink and it seems to ease up then. We will have to watch this to make sure she is not one, getting sick, two, having effects on her throat (i.e. swallowing). She's had this happen for three days straight now. No fever though.

She is looking pretty good today except for her poor elbows. They look terrible. It always amazes me how she never complains. I ask her if they hurt or itch and she always blows me off with a "they are fine, who cares momma".

We are watching the Miss Louisiana pageant tonight. Madeline has participated in each category herself here at home. She plans to be Miss Louisiana one day, just like her Grammy (Miss LA 1969). She was a contestant in our living room along with the show tonight. She put on my high heel boots and bathing suit to model her fitness and swimsuit...interesting combination. She also participated in talent - she danced of course. I had to constantly tell her to to sit down for she kept standing right in front of the TV taking it all in. Our cousin was in the pageant, but she did not win. I'm sure she will try again.

We have to prepare for blood work next will let you know how that goes. She was brave the first time...hope the bravery continues.

Friday, June 20, 2008

Take it day by day, miracles do happen

Well, I was so excited that Madeline's face looked so much better, but this morning before I left for work she was red again. Not as bad, but her eye lids and nose ridge were red. She did a great job at dance though. Never complained once about being tired. She seems to be stretching better too. I had noticed in May that she was not as limber as she used to be. It may of been the meds, but I can't help but wonder if it was the disease.

On another note, I decided to share the blog today. I was hesitant for some reason unknown to me, but Rick encouraged me to do so, so I did. The most incredible thing happened because of it. My assistant, Debbie, forwarded the email to her friends. After lunch, I had a message on my phone. It was from a lady in her Sunday school class whose daughter had this disease. I am going to call her and from her response that she is 22 and in give me such hope. What a miracle that we have connected. Interesting how these things happen. :)

Thursday, June 19, 2008

Face is less red

Madeline had a great day yesterday. When we came home from work, you could not see her rash (on the face) at all. It was as if it had totally disappeared. We then went to a place for the kids to play and fully expected her face to get red from all of the running and climbing...but it did not.

Before bed time, Rick put Madeline's cream on her elbows. They were still inflamed, but then we looked at her hands and I would have to say they are 50% improved (less grottron's papules). This is VERY encouraging. The doctor told us it would take up to 12 weeks for the meds to begin to maybe we are on the RIGHT track. :)

She is swimming right now with her friends, brother and Aunt Ashlee. Then she has dance tonight for three hours. Her stamina is great. Thank God. Let's hope it continues.

Wednesday, June 18, 2008

Pink Pointe Shoes

Madeline was recommended for pointe (ballet) this year. This is quite an honor considering she is only 9 years old. We are so proud. ;)

Last night, her dad and I brought her to her first class. She had to be fitted for her pointe shoes after, since we've been out of town on vacation. You would of thought it was Cinderella trying on the glass slipper, Madeline was smitten. Once we purchased them (which was sticker shock) she had to put them on. "They are beautiful and pink," she kept saying.

Needless to saw, when Rick and I went to bed last night I had to tell her to go put them up. She told me she can't wait until next Tuesday for pointe. I am so glad she loves it, plus it is so good for her. The more active she is, the better for her and her JDM.

We did take our metho last night. I just called to check on her and she is up...barely. Trey was barely up's almost 11 a.m. Secretly, I'm jealous.

Tuesday, June 17, 2008

Summer w/ Aunt Ashlee & Papa

Trey and Madeline have the wonderful luxury of staying home during the summer while mom and dad slave at work. :) And even better this year, they have Aunt Ashlee staying with them. Normally we hire a high school student to stay with the kids, but this year we were so nervous to leave Madeline with someone who may not put on sunscreen or recognize a health issue quickly. Luckily, their Aunt Ashlee offered to come up for the summer from Baton Rouge and help us out. She is a teacher/coach 9 months out of the year, so this worked out perfectly. On the days she can't be there - Papa is filling in. That's always fun too.

We love you very much Aunt Ashlee and Papa - thank you is not enough to say about your generosity of time given to the kids. Plus, they love it.

As for Madeline, I just called her and she is dragging herself out of bed. She is a sleeper, that one. Tonight is a methotraxate night so I am sure she will sleep a lot on Wednesday - that seems to be the pattern. Interestingly enough, I mentioned that to her physician and he said that is not a common side effect. But we see it every Wednesday. On other websites I've noticed where other children have the same side effect. Interesting.

Sunday, June 15, 2008

Back from vacation

We just got back from Florida - the vacation planned prior to diagnosis; the trip dreaded due to dealing w/ the sun. Believe it or not, we actually had a great time and not one sunburn. She didn't even tan. Thank God! We did not slow down one bit either. We went to the waterpark for eight hours, went to the beach and pool daily, rented a boat and was on the water for over four hours, shopped, played putt-putt, did it all. Besides the great trip, I can now feel confident in sunblock. We applied and reapplied every hour on the hour when in the water. It worked - thank God! Okay Rick, you were right.

She never tired either - or no more than the rest of us did. She climbed the water park stairs (her brother counted one of them to be 105 steps) for eight hours straight. Therefore, I still believe she has no muscle involvement. We will keep praying it never happens.

Great time...oh, and talk about a small world. Another family was staying by us and we found out their little girl who was Madeline's age also has an autoimmune disease - amazing. Or maybe there are so many more like us that it takes something like this to happen before you recognize it. They are pen pals now, well not the snail mail kind (have already emailed each other many times now).

But it's good to be home.

Friday, June 6, 2008

Getting ready for vacation

Madeline is over her virus and feeling, looking good. I am very nervous about going to the beach. We planned this vacation before Madeline was diagnosed, so we could not get out of it. Rick is so wonderful. He keeps reassuring me to trust the sunblock, hats, etc. Everyone is so excited to go to the beach and I do not want to put a damper on that.

I am so thankful that I have a true partnership marriage. Rick is the most caring individual I know and the best dad and husband ever. I don't know how I got so lucky. :)

Monday, June 2, 2008

We go to doctor

I decided to bring Madeline to her pediatrician. I guess I'm being a little over reactive, but I am taking no chances. He checked her out (weighs 74 lbs, 4'9" - she is growing so fast) and was sure it was viral and she was getting over the illness well. No meds. Good.

She complained of her knee and I told him, but he said knees don't have much muscle and that is what she would have problems with. He thought her growing so much (inch in a half in last three months) would be more the reason. I remember Trey complains of his knees at growth spurts too.

Okay - breath...

Sunday, June 1, 2008

Week of May 26

Our first full week of the summer.

Madeline swam, played with her neighborhood best friend Alison, slept and even spent the night away (this is the first time since she was diagnosed). It all went fine. She did run a small fever (100) one evening, but woke up the next morning without fever. She complained of her throat and nose. Will keep close eye on her.

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.