Thursday, November 26, 2009

Happy Thanksgiving!

This Thanksgiving I am so grateful for…

being able to share our family’s story. I hope our story shared online with others is a source for you to grow hope, optimism and peace knowing there can be good outcomes with this disease.

I am so grateful for…

my wonderful and supportive husband who was especially strong at the beginning of our daughter’s diagnosis. He held me up for those first three to four months when I was living in a fog of depression and doubt.

I am so grateful for…

the talented and skillful physicians who diagnosed Madeline so quickly and developed a treatment plan that worked beautifully.

I am so grateful for…

being a mother to two incredible, beautiful, happy children who are growing up way too fast.

I am so grateful for…

my parents and in-laws who love us unconditionally, as well as our sisters, brothers and extended family and friends.

I am so grateful for…

our wonderful news that Madeline is on the course to remission.

I am so grateful for…

having the capabilities to provide for her care and in our small way assist with her healing process.

I am so grateful for…

God believing in Rick and I as parents - especially for the fact that he chose us as parents for a child who is ill.

I am so grateful for…

now seeing life differently.

I am so grateful!

Hope you have a wonderful and blessed Thanksgiving!

Gobble! Gobble!

Tuesday, November 24, 2009

Oops...we've already messed up!

One - forgot to post pictures of Madeline and her brother from Halloween. Two - we already got out of the habit and forgot to give Madeline her methotraxate Saturday night. I woke up in a panic Sunday morning. I couldn't believe we forgot. I guess not having to take medicine every night, you get lazy. I guess being able to think this way (forgetful) is a good thing....but only as long as we remember to take the medicine quickly.

Thanksgiving is just in a few days. But first, we will celebrate the birthday of my sweet husband and the wonder daddy to my two babies. Happy Birthday, Rick! I love you...I love us...I love our wonderful family!

Friday, November 13, 2009

Still celebrating...

We are still celebrating and adjusting to Madeline not taking her nightly medication, the cyclosporin. It's actually very odd. I keep thinking I'm forgetting something and then realize, our routine of her taking her meds is no longer happening. And that's a great thing.
I wanted to share some other doc day pics of us celebrating while in Texas. One is she and her daddy waiting to see Dr. W and the other being a celebration dessert at Olive Garden after the appointment.

Madeline is doing fine except she has a nasty cough and congestion. I believe she just has a cold, but will continue to watch her. Another thing she has just began to complain about is the top of her foot. She has a knot on it, but does not recall hitting it. We'll have to keep watching...and not thinking it's other things caused by JDM.

Breathe...relax. :)

Friday, November 6, 2009

And the results are....drum roll please!!!!

Does her face say it all??? Madeline's appointment went great. The doctor took her completely off her cyclosporine. This made her so excited. She hates taking that medication which is mixed w/ orange juice. It tastes terrible, so she says and so I can smell.

He was so happy with her results, strength, activity level, etc. We go back in three months and if all is still good, he will begin to decrease her methotraxate.

Pinch this for real??? We are on the road...that beautiful road of remission. Thank you God!

Monday, November 2, 2009

A Texas We Will Go...

We leave at 7 a.m. to head to Madeline's doctor appointment in Texas. It's amazing how easy these appointments have become. I can remember the nausea that would set in and anticipation that would worry me the entire drive to his office. Now, it's not too bad. Especially since Madeline is doing so well.

Madeline's doctor is a pediatric rheumatologist at Texas Children's Hospital. I've always referred to him on the blog as Dr. W. At our last visit, he decreased her cyclosporine to 1 cc vs. her former 2.5 cc. This decrease began in September. As of today's date, we see no change in Madeline. She is doing really well. She still takes her methotraxate, 10 mg, each Saturday.

It will be interesting to see what he thinks. I don't believe he will decrease her meds any more tomorrow and we are okay with that. Slow and steady...slow and steady.

Wish us luck and say a little prayer for Madeline. I'll give an update when we get back.

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.