Sunday, June 21, 2009

To the Mountains

We've left on day one of vacation - the Smoky Mountains. Madeline is feeling and looking great. We'll post pics and give updates on our vacation.

The last time we were here was two years ago...before Madeline was diagnosed. I got sick while on vacation, as well as Madeline. I often wonder if this is what triggered her JDM. But who knows???

No thoughts like that now...only good ones and good memories to make this week.

Friday, June 19, 2009

Great news - blood work

Great news regarding Madeline's blood work. Here are the results.

AST - 25 (0-31 normal)
ALT - 11 (0-31 normal)
CPK (CK) - 112 (24-170 normal)
LDH - 225 (120-300 normal)
Aldolase - 5.2 (3.3-9.7 normal)

I was so excited when I saw her results. I know the reality is he probably had her do these tests as a base point to follow when we begin to decrease in September. But at least I know the medicine is working great and her little body is not inflamed. I do wish he'd ordered an ANA. I'll have to remember to request that next time we see him.

Now, it's time to pack...VACATION!!!

Tuesday, June 16, 2009

Blood draw

Madeline is attending art camp this week. They are making stained glass and I can't wait to see all the beautiful pieces she is making. Yesterday, after camp her dad dropped her off to me at the hospital and we had her blood drawn. I'm anxious to find out the results, especially with the additional testing. I'll go down to medical records later today.

We are getting ready for vacation...and it can not be soon enough!

Wednesday, June 10, 2009

Quarterly Photo Update

Attached you will find new photos of Madeline's JDM affected areas. She is looking great and has somewhat of a tan. I promise we are wearing sunblock, it's just her complexion tans easily. Last year, we almost totally stayed out of the sun. She only played outside in the evenings. She couldn't handle the heat and it hurt her skin. This is no longer a problem. Great strides...

Wednesday, June 3, 2009

Dr. Visit in Texas

We traveled yesterday to see Dr. W in Texas. Overall we had a good visit. Here is an overview of her height/weight, etc.

Height - 5 foot - a very tall 10 year old. Three more inches and she passes me up.
Weight - 95 lbs. - her brother, who is 13, only weighs five pounds more.
Temp - 98.5
BP - 112/64
Heart Rate - 103

We started out the appointment with the regular questions of how she feels, how is she doing, etc. We discussed her only problems being the various illnesses and ear infections we constantly battle. He discussed her flu and other various items. He then viewed her skin and completed her muscle strength testing. She pasted the strength test with flying colors. He even commented how strong she is. Nothing wrong there!!! GREAT!

From our last appointment he mentioned decreasing her meds at this visit. This left us anxious and excited. I had finally convinced myself this was a good thing and then yesterday he decided to not decrease her meds. I was a little disappointed. He wants her to get through the summer and decrease her cyclosporine in more than half in September. We will go from 2.5 cc to 1 cc. We will not go back to see him until October so he can see how she reacts. We will not decrease the methotraxate yet.

He also added additional blood work for her every two months. Now the order includes ALT, AST, aldolase, CPK and LDH. I will bring her this week for those tests.

Overall, this was a great appointment and I feel we are so lucky to have such great outcomes so quickly. With the decrease of meds this fall, we are actually at the two year mark for her first "symptoms" of JDM. Hard to believe it's been this long, yet at times, it seems just like yesterday.

One fun part of the appointment....Madeline watches a show on TLC called Little People. She realized that the female - Dr. Jennifer - works at Dr. W's hospital, Texas Children's Hospital. She wanted to know if he knew her, which he did. She thought that was awesome. Too funny.

Monday, June 1, 2009

If it ain't broke...

We spent the entire weekend outside playing in the pool. It was great weather and we loved every moment of it. Madeline had her good friend, Madeline, over to play. We put sunblock on many times, but Madeline's face still got a little red. When she woke up Sunday, it was still red. I feel so guilty.

We go to see Dr. W in Texas tomorrow. Besides the red face, Madeline also has a tan. We've put sunblock on but she is still tanning. She is like her dad who can get very dark easily in the summer. If he says anything, I'll remind him (Dr. W) that he was the one who said to continue letting her be a child and do regular activities. Swimming during the day (especially w/ a pool in your backyard) is one of those things. :)

I anticipate Dr. W decreasing her meds tomorrow. One moment, I am so excited. The next, I am horrified. I guess I have the mentality 'if it ain't broke - don't fix it.' We'll see.

I'll update you on the visit tomorrow. 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.