Madeline's Blog Archive
- Week of May 26
- We go to doctor
- Getting ready for vacation
- Back from vacation
- Summer w/ Aunt Ashlee & Papa
- Pink Pointe Shoes
- Face is less red
- Take it day by day, miracles do happen
- Miss Louisiana 2020
- Clay, pimples, hair and blood - got your attention...
- Our doctor is WONDERFUL
- Bribery can be a good thing
- Pictures of Madeline's blisters in palm of hands
- Pics of us...
- She was brave
- Creeping Crud/Advice needed
- She is making me nervous!
- ▼ June (17)
- ► 2009 (104)
- ► 2010 (61)
Monday, June 30, 2008
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
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
Thursday, June 26, 2008
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
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 orders...so 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 symptoms...so 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
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 right...hair. 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
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 week...so will let you know how that goes. She was brave the first time...hope the bravery continues.
Friday, June 20, 2008
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 remission...it give me such hope. What a miracle that we have connected. Interesting how these things happen. :)
Thursday, June 19, 2008
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 work...so 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
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 either...it's almost 11 a.m. Secretly, I'm jealous.
Tuesday, June 17, 2008
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
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
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
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
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.