Thursday, January 29, 2009

My mind never stops...

We are having a good week, just a busy one. So busy, I've neglected the blog. Madeline looks and feels good, but still having the pain in her legs in the morning. I now have a stool in my closet that she sits no so I can do her hair. I hate seeing her in pain. Her legs still get the red streaks as well.

While working w/ Trey on his science project on JDM, I was looking online for pics I could print out for his board. One of those pics were for vasculitic ulcers. I came across a site called cure4Lupus and saw a picture of cutaneous vasculitis. I could not believe what I saw. It looked like Madeline's legs in the morning. Of course, these photos were worse than what she has. But, it made me ponder...

Monday, January 26, 2009

Brotherly Love

Trey has a science fair coming up. He's decided to do his project on JDM. Wow...that boy really surprises me at times. We spent Sunday researching for his paper and now he has to make the display board. It was a good project for him for he hasn't quite understood what Madeline's disease and it's risks really are. When we were reseaching risk, side effects, outcomes, he kept saying, "Mom, could that happen to Madeline? Could Madeline be in a wheelchair, have surgeries, die?"

Tough questions, with tough answers. Both of them are too young to have to be dealing with this mess. Madeline, of course. But Trey, too. Sometimes we forget how this affects the siblings, sometimes I forget too.

Friday, January 23, 2009

It's arrived

Madeline received in the mail today her prayer shawl from Petra. Boy, that was fast. I thought you'd like to see Madeline wrapped up tightly in her special shawl. She said, "it's as if God's wrapped his arms around me, momma." She loves it. Thanks, Petra. You're an angel.

Wednesday, January 21, 2009

Say a little prayer for you...

It's amazing how we find people and people find us...regarding Madeline and her JDM. An angel has come into our life by the name of Petra. Petra, whose husband suffers from the adult form of Madeline's disease, didn't realize children also suffered from this ailment. She went to a national conference where she met several children and from that the "prayer shawls" were born. Here is her story in her own words...

"My husband Dave was diagnosed with IBM (Inclusion Body Myositis) 16 years ago.In September 2008 we attended the Myosits Conference in Denver, CO. I was vaguely aware that children had this decease - but I thought that it mainly consisted of a rash. A little girl by the name of Kory Taylor (7 years old) was pointed out to me and I was told that she had the same decease as the adults. I was so touched by this child and family - I just knew that I had to make prayershawls for as many kids as possible. I also met to other girls and the grandparents of another girl that was not there. thru them I had some other parents contact me - all the kids now have prayershawls and I stay in contact with the parents and kids. I feel so blessed to be able to do this.The prayershawls are crochet. The yarn is prayed over - then there is prayer while the shawl is croched. Then I have my Sunday School kids pray over the shawls. Each shawl is prayed over in the name of the recipient by the church. So, a lot of prayer."

She has made 289 shawls to date for children in the US and around the world. Madeline will receive her shawl in the mail any day now. She is so excited. Prayer...what a powerful thing. And Petra...what a powerful woman.

Tuesday, January 20, 2009

We survived!

What a great weekend! Madeline celebrated her birthday with a slumber party and regular birthday party with additional friends the next day. We had a great time. God was good to was a nice day (around 60 degrees) with clouds blocking the big bad sun. Madeline did fine. Still no red face, rash, etc. As you can see in the picture she was excited and sweating from running up and up and up the giant slide we rented. I love seeing her like this - happy, excited and loving life.

Friday, January 16, 2009

The sun is being nice to us

One full week of me not putting sunblock on her....and nothing yet to date. No redness, burning, rash, etc. Yee-haw! And it's not like we've had cloudy days either. It's been beautiful, not one cloud in the sky fabulous kind of days.

We are still celebrating Madeline's birthday. Yes, Princesses get to have a whole week. We now have five 10 year old girls spending the night at our house. Tomorrow is her birthday party where around 30 kids should show up. Fun day...I hope we get some sleep.

Thursday, January 15, 2009

Madeline's Quarterly Photo Documentary

I've added a variation of photos of Madeline so you could get regular views as well as close up views. Doesn't she look great?!

Tuesday, January 13, 2009

I know, I know...

I know I've not updated the quarterly photos...will do that tomorrow. My camera was not cooperating w/ the lighting - - or maybe it was the photographer.

Madeline pulled her groin muscle at her cousin's birthday Sunday, so she did not go to pointe. It's still bothering her today. Not sure how long that takes to heal, but I would guess it will be sensitive for a while. Not sure if her medications affects quick healing such as a pulled muscles???

We're gearing up for the big birthday party on Saturday. We invite..I know we're crazy..around 40 kids. So far, everyone has RSVP'd w/ a yes. Guess I'll have to break out the wine early on Saturday. :)

Monday, January 12, 2009

Happy Birthday, Madeline!

It's a big day today at our house. It's Madeline's birthday. And it's not just any birthday. It's her first double digit birthday. She is 10 years old.

She had school today where I brought cupcakes for her class. I had such a busy day at work today and ran around like a wild woman and just in time got to her class. But when I showed up to her class, and saw her was all worth it. Everyone sang her happy birthday and she blushed, of course.

I bring cupcakes to the class each year. If you notice on the blog home page there is a picture of Madeline on her 9th birthday in her classroom. Boy she looks and feels so much better than this time last year.

I remember (and often replay that memory in my head) the first time I googled Madeline's disease name to learn about JDM. The first thing I kept seeing was this child and that child being granted their "Make a Wish" gift. Of course, I was devastated. It's bittersweet this memory today. I didn't know a year ago what we would be facing with Madeline, but I now know this little girl is going to make it and be stronger due to this illness.

Today I celebrate the birth of my beautiful baby girl. But now, I also celebrate her life and the wonderful, happy, beautiful things that are to come to her in the future.

Happy Birthday, Madeline. Your daddy and I love you more than you'd ever know. We are so proud of you and honored God gave you to us to take care of forever and ever.

Sunday, January 11, 2009

It's looking a little brighter...

I did something that is considered controversial in the JDM world today. Madeline attended her cousin's birthday party today (outside, sunny, great day). I didn't put sunblock on her. I didn't know what to expect. I guess I thought she'd be red, swollen, etc. But she wasn't. Am I being crazy? Overprotective? Irresponsible?

I can't help but wonder how much the sun has to do with her illness. I know there's literature that list it as a possibility, but I've not believed this was Madeline's trigger. I also often wonder about the children who once had JDM, who now are adults, deal with the sun. Are they still after being in remission for 10 - 20 years obsessing with sunblock, hats, etc?

I became obsessed with the sun right after Madeline's JDM diagnosis. The child didn't walk outside without sunblock, hat, etc. I'd even have her under umbrellas. Now, I'm reading in literature that we are not getting enough Vitamin D with our indoor activities and sunblock. Dr. W even mentioned this in our last visit.

I'm going to relax a little w/ my anti-sun obsession. It's a new step for me this year and one that I really need to relax with.

Saturday, January 10, 2009

Dancing her a@* off today!

I'm still so happy to spread our good update. I'm just feeling really blessed right now and very anxious for a great 2009...which, by the way, is pretty darn good so far.

Madeline had a big day today. She went to a local school dance camp from 8 a.m. - noon. She had a great time and her cousin is on the dance line, so that made it even better to her. Then, I picked her up to bring her to her competition team dance practice. They are having extra practices on Saturdays now since their competition in Alabama is coming up. Otherwise, Madeline danced for almost eight hours non-stop today. I thought she'd be exhausted...but nope. She's outside with the neighbors playing hide-and-go-seek in the dark. I love it.

We've turned a great curve and I am so happy.

Thursday, January 8, 2009

I forgot...

I forgot to add Madeline's H & P information from her doctor visit. Here they are:

Blood pressure: 111/63

Temperature: 98.2

O2: 98

Pulse: 87

Weight 98.2 (gained 16 lbs. since July, but the child is no where over weight)

Height 59 inches (grew 2 3/4 inches since October)

I've also included a picture of Madeline and her Daddy while waiting for the appointment. What a great day!

Tuesday, January 6, 2009

Great news!

We had our check up today in Texas. I knew Madeline was really doing well, but that always lingering concern stays with me. Someone explained having a sick child to me that was very's like having a grand piano hanging over your head all the time but held onto by dental floss. Well, I think we now have rope holding up that piano.

Dr. W did the routine check of her skin, nails, knees, elbows, etc. He then did the routine strength, muscle tests, looked at her vitals, etc. He then turned to us and said, "I can't believe how well she has responded in such a quick time." I thought I was going to cry at that point. He then looked over her records more and pondered, pondered and said, "I think we are going to keep her on her meds for another three months. And if she is still doing as well as it seems, we'll begin to taper her meds"!!!!!!!!!!!!!!!! YEA!

Of course, he reminded us that it may just be the meds masking the disease, but it also may be the disease simmering out.

This has been the hardest nine months of my life and Rick's, but I am beginning to feel there is a light at the end of the tunnel. Are we heading to remission? May be too soon to say, but my momma gut tells me we are in the right direction.

Thank God!

Monday, January 5, 2009

Check up in Texas tomorrow

We are heading off in the morning to see Dr. W in Texas. It's time for Madeline's quarterly check up. I'm always a little anxious when we go. I'm always hopeful for good results, but still have a lingering concern in the back of my mind.

He mentioned at our last appointment changing her to IV meds. I hope we do not have to do that for her sake. I do plan to ask him if we can move away from the liquid form of cyclopsporine and try the pill form...if there is one for kids. Her methotraxate seems to be okay. Of course, still makes her feel and look exhausted on Sundays.

Will let you know the outcome the moment we get back. Say a little prayer for a safe trip and good news.

Saturday, January 3, 2009

Here she is....

Well, the monster has been created. She won first runner up, most beautiful, best smile and most photogenic. Great...on the ride home she asked me when the next pageant will take place. FUN..NOT! I thought she'd get it out of her system, but I think she caught the pageant bug.

We just finished taking her metho and cyclosporine. She's off to another friend's house to spend the night. Boy, she has a better social life than any of us.

Friday, January 2, 2009

I am weak

Tomorrow is a big day for Miss Madeline. I've finally given in to her begging. She is going to be in her first pageant tomorrow. Lord help us. Either it will be the worst thing she's ever done or we will have created a monster. I'm betting on the latter.

It's a local pageant (nothing JonBenet to this one). The actual title is Little Miss Rapides Parish. She has been walking around the house all evening posing and smiling and asking us to give her another question to practice her interview. We'll give the outcome tomorrow in the blog.

Madeline's been complaining about her stomach hurting more often. I hope nothing is going on with her intestines. The doctor's office called today and changed our appointment from Thursday to Tuesday. I'm anxious to hear how Dr. W thinks we are doing.

Wish us luck in the pageant. You know every girl does need a crown.

Thursday, January 1, 2009

Happy New Year!

We had a great time last night. My in-laws came over and we watched LSU stomp Georgia Tech. Geaux Tigers! Madeline had a couple friends spend the night, so they had a great time. And Trey put on a fireworks show that was pretty darn good. We did stay up until midnight for a champagne toasts, but soon after we all went to bed.

Today, we went to my parents house for the traditional New Year meal - blackeye peas, rice, hog jowl, cabbage and cornbread. I made sure we all ate plenty hog jowl for health and cabbage for money. :)

We are laying low this evening. Madeline is spending the night with a friend tonight. Trey has a friend over. Rick and I are watching football and enjoying the fireplace. It's really nice.

2009 is looking good so far.

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.