Thursday, April 30, 2009

Making headlines...




Madeline was in the newspaper today. This is she (left) and her friend Chesney at the Mobile dance competition. This was their tap outfit that they danced to the song "New Orleans". It's an awesome routine. They also performed this routine at our recent competition in Florida. Go Madeline!!!

Tuesday, April 28, 2009

Feeling Good and Blessed

We are the traveling family lately. This past weekend we were in Baton Rouge for Madeline's big brother Trey's baseball game. We played three games and enjoyed more beautiful weather. Unfortunately, both Trey and Madeline caught a stomach virus. Only lasted 24 hours and never made them run fever. Thank Goodness. Madeline was over the virus just as quickly as Trey, so that's always reassuring.

One thing regarding her suppressed immune system due to her medications - I remember when she first started her medications this was my biggest fear. What if she caught something she was not able to overcome? So far, so good. Hand washing, hand washing, and lots of sanitizer are good things. And now we have the Swine Flu knocking at our back door. UGH!

Madeline has two field trips this week. I'm going with her tomorrow to SciPort - a science museum in Shreveport. Amazing in just one year how wonderful this spring is compared to last. She looks good, feels good and I feel blessed.

Friday, April 24, 2009

High emotions..or just plain tired

Madeline had a rough day yesterday. I'm not sure what is wrong with her. She had dance (her three hours of classes she has each Thursday night) and kept calling her dad and I to pick her up early. I ended up going the last 30 minutes and getting her early. The moment she walked out of the classroom, she began crying. I didn't know what was wrong. She said she didn't either. She had no fever, no pain, etc. It did bring me back to this time last year when she would do this for no reason at all. Except last year she'd also have a "breakdown" of anger she could not control - all part of the disease I know now.

I'm hoping she is just tired. I know I am. We've had a busy week with the dance trip to Florida, then back to school and no again leaving this weekend for her brother's travel baseball tournament.

Good thing there's only 20 days of school left. Summer break should help us all.

Tuesday, April 21, 2009

We're back!!!

We made it home from Florida late Sunday. Madeline and her dance team did an awesome job. They won Top First, Gold Elite (which is very, very good) for both their jazz and tap routines. They had a wonderful time and we had great weather. Oddly enough, it was actually a little cold there. In fact, it was warmer at home in Louisiana than it was in Florida.

The bad news...Madeline's face got a little red. I don't know if it was truly sunburned or just her rash irritated. The odd thing is that today there is nothing there. So a little confused by that one. It was really a struggle getting her to come to me to reapply her sunblock. She had all her friends there from dance and she wanted to run, swim, play on the beach...like any kid would want to. She and I got into a fight at one point and I had to get drastic with her. I told her, "if you don't put on the sunblock we are going to the room and staying there". I think she thought I was bluffing her, but then she saw I was dead serious. I kept reminding her why this was so important. But it was as if she had blinders on. This makes me nervous for her teen years. In fact, she commented to me (yes, at the age of 10) how jealous she was at all these pretty, tanned girls. She even said, "Momma, remember how dark I could get? I hate how white I am now."

Again, I see this battle only getting worse with age. What do you do?

Wednesday, April 15, 2009

Dancing at the Beach

We leave today for Madeline's national dance competition. And we are so excited for they've worked so hard to earn a spot at nationals. The downside...it's in Florida - on the BEACH. Literally, they are building a stage on the beach where the dancers will perform. UGH!

So, here we go again. This will be an entire day of me stressing about her getting too much sun. I know it will be stressful for her too because I bother her with my worry. I plan to bring a golf umbrella and tons of sun block. I just hope the heat does not bother her. Last year, when we had already planned our vacation to the beach before her diagnosis, Madeline barely went outside. She ended up staying in the beach house almost the entire time. Not fun for her.

Wish us luck. I do hope they win. They deserve it.

Monday, April 13, 2009

Helplessness!

We had a great Easter, except that it rained. But we didn't care for we had enough chocolate in the house to keep us occupied.

Madeline had a strange thing happen on Saturday night. She's done this a couple times in the past. We had Madeline's grandparents and Aunt Ashlee over to dye eggs and eat spaghetti. She sat down to eat supper and just started crying. Not just the sad cry, but extreme "I can't handle the pain" pain. We asked her what was wrong and she said it was her hip. She pointed to the middle section - between her pelvis and outside hip. It makes you think it is her hip flexor...but what do I know.

I really want Madeline to have an MRI done on her legs and hips. I plan to ask..or more like demand this test at our May appt. I would feel better if we could just know if this is the JDM or find that it is something else. She still has the red splotches on her legs and the irritating, itchy feeling it gives her in the mornings or if she is standing for a long time. This drives me nuts. I'm not quite sure what to do if he says he will not order the MRI. Helplessness!

Wednesday, April 8, 2009

Results

We were supposed to go to Texas yesterday for Madeline's quarterly check-up. Unfortunately, we had to cancel her appointment due to her fourth grade required LEAP testing. We will go in May instead, which is fine since she is doing so well.

I just called to get her blood work results. All good - ALT - 11; AST - 24. Good news.

We are gearing up for the Easter bunny and have big plans Saturday to dye at least two dozen eggs. We will get together with family as well on Sunday after Mass. I just hope it doesn't rain so the kids can do their Easter egg hunts. Just doesn't seem like Easter without being outdoors and hunting for eggs.

Monday, April 6, 2009

Drama

We had drama this weekend at our house.

We woke up Saturday morning since Madeline had to be at a meeting at 8 a.m. and then dance from 9:30 a.m. - 12:30 p.m. The boy's had baseball...so hectic day. As I was leaving the house I mentioned to Rick that last night Madeline's cyclosporine was empty and needed refilled. I asked him to take care of it and I'd pick up the script. Well, long story short...the pharmacy didn't have any in stock. Nor did the over 10 - 15 pharmacies in town. Rick even tried Lafayette, no luck. Rick and I had phone calls going back and forth trying to figure out what to do. I was in a panic! He was too. We have NEVER missed a dose and I felt so guilty for dropping the ball on her refills.

So, Madeline has not had her cyclosporine for two days now. The pharmacy assured us we would have it today (Monday). I don't really know what I expected by her not taking the meds, but I sure the heck didn't want to have her affected by my lack of filling her meds. Oh, the guilt...it's terrible.

Thursday, April 2, 2009

April showers

Another new month...hard to believe. It seems to rain daily...it's getting rather old.

I've slacked somewhat on keeping up w/ the blog since I've been a little down and out. I'm heading to the hospital in just a bit to get a nerve block in my neck. I can't wait to get this done for it give me great relief in a day or two. Gotta love those interventional radiologist...this is much better than back surgery!

Madeline is doing great. She has a busy week for they are doing their LEAP testing. This is a test that determines if she gets to progress to 5th grade. She's nervous, of course. But I am not. She is a great standardized tester, so she'll do just fine.

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.