Sunday, March 28, 2010

The Two Year Mark

It's been two years.

Madeline was diagnosed w/ juvenile dermatomyositis (which took me almost 30 days to learn how to say)two years ago on this day, March 28, 2008. She was nine years old.

Madeline's March 28, 2008 story can be found on a earlier blog, but I want to talk about Madeline's JDM story today. Madeline's JDM Story is a success story. She is doing wonderful. She only takes two methotrataxate pills once a week and lives life absolutely normal. The weather is warming up so that does mean the sunblock with be applied soon - why take any chances? She dances for 3 - 6 hours per week, runs in PE weekly, plays like a normal 11 year old and is beginning to become (if you know what I mean) a pre-teen. She's growing at a normal rate and an honor roll student. She's smart, funny, beautiful, well perfect. Her only problem...she still has JDM.

We are on the road to remission as long as all continues down the path we are anticipating. We all can't wait for this day.

I'm not in my doom and gloom mood any longer, which you'd identify quickly if you read any of my earlier post. I am now optimistic for Madeline's future. I think she will grow into a normal, healthy teen, then adult. My only concern is when she tries to become a mother - will she have issues, will it come back? But that's a long time away and out of my control.

Today, I am thankful and hopeful. I believe Madeline knew exactly when she'd go into remission - which she told me at the age of 8 her JDM would be gone when she was 12. She is right on this path and I can't wait for her to reach the goal.

And for any of your mommas and daddys who are scared, stressed, angry and confused as to why this had to happen to your baby, be confident to know there are success stories with this disease. And my baby girl's JDM Story is one I believe is going to have a happy ending.

Two years down...a lifetime to go!

I love you Madeline...more than you will ever know.

Monday, March 22, 2010

Madeline's Dance Solo

Video 3

Madeline competed this weekend with her dance team (jazz & tap) and as a solo dancer (lyrical ballet). She did an awesome job and of course we are so proud of her. I can not imagine being 11 years old and being brave enough to get on stage in front of hundreds of people to dance. She won a gold, which is AWESOME!!!

She was upset because the stage was very slippery which made her nervous on her leaps, but she still did great! Again, did I tell you we are so PROUD!!!

I've attached the video of her solo. The music is beautiful and appropriate considering at one point we didn't even know if she would be able to dance due to her JDM. But thank God, she can dance!

Monday, March 8, 2010

I know, I'm late...

Sorry for not updating sooner on Madeline's doctor visit. After being away from work to go to Texas, I came back to a very overwhelming rest of the week. But who wants to hear about that...let's hear the good stuff...Madeline's update.

We had a great trip to Texas. Traffic was not bad at all and the weather, for once, was clear. We arrived to the doctor's office and didn't even wait five minutes. Madeline was escorted back where we do the normal height, weight, etc. I don't have those stats with me today, but will update them soon. Needless to say, the girl has grown tremendously. All of her vitals were picture perfect as well as her blood work results.

We didn't wait for Dr. W for long at all. He came in, did his questioning w/ Madeline, examined her hands, nail folds, face, wrists, knees, elbows...well you get the idea. He conducted his strength tests (which she passed with flying colors)and asked us some additional general health questions. We then made Dr. W aware of the knot on the top of her foot. He examined and said he believes it is a cyst. He said it moves and is attached to her ligament. calcinosis. Cool! He said if it continues to bother her to see another physician.

The grand finale...he decreased her methotraxate in half!!! Now, she only has to take two pills (5 mg.) once a week. He also said if she continues along this path...looks like all meds could be gone very soon! Of course, he kept saying we have to continue to pray things stay this course. We can surely do that.

We were so excited. I mentioned to Dr. W how wonderful this is and how fast she'd gotten to this point. I was wondering if this was get to this point so fast. He quickly reminded me that this has not been fast - it's been TWO YEARS!!! How in the world did I forget that!

At the age of 8, when Madeline had her first signs of the disease to the age of 9 when she was first diagnosed, she'd always tell me she'd be okay when she was 12. She said this with such confidence and belief. Well baby, you're guardian angel must of been telling you this and I do believe you and they were right.

Monday, March 1, 2010

Texas bound

We are heading to Texas tomorrow for our check-up w/ Dr. W. This is the check-up following our cyclosporine divorce. Madeline is doing very good. Now, we will see if the methotraxate gets to be decreased.

One item we need to discuss w/ Dr. W is a pain Madeline is having in her foot. She has a knot on top of her foot that hurts her. The pain comes and goes. Of course, me being type A personality, I automatically worried it was calcinosis. It's probably nothing, but worth given some attention to tomorrow.

I'm waiting for her blood work to be faxed to me today. I had to go out of town for business Friday so her Daddy brought her to the hospital. Of course, she did great. Daddy did too! :)

I will post our Dr. appointment results ASAP. Wish us luck!!!

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.