Tuesday, February 22, 2011

Proud Momma

Jordan has been asking for a while if she could have her own blog. She wanted to let other kids know that they aren't alone in their fight against JA. She started out doing videos of her injections on YouTube and she had such a positive response she wanted to do more. I gave in. She is now blogging about her arthritis. She wants to raise awareness that kids do get AUTOIMMUNE ARTHRITIS. She wants a face out there to show people it's not only the elderly with arthritis. She wants it to be her face and we support her 100%.


Jordan's experiences, in her own words: Warrior 4 JRA

Monday, February 21, 2011

A little look at J's infusion

video

There is a reason for everything.

Yes, we've all heard that over and over again but it is the honest to God truth.

Our life isn't what we had planned it to be. But really, how many people have a plan and actually stick to it? We all think we know what we want and need but then something happens and your faced with a reality you didn't expect.

Our reality is autoimmune arthritis. Blah, blah... I say that all the time, I know. But if J didn't have JA our family would have missed out meeting some amazing people. I've met several mothers in the same situation I was in 6 years ago. Lost, confused, hopeless and not having any idea what the future held for my child. I still don't know what the future holds for Jordan but I know she will be OK. I've met some amazing young women who have lived with this disease since they were just babies. The pain and struggles they've been through are hard to hear but they are here and they are a functional part of society. They advocate for themselves and the thousands and thousands of children just like Jordan.

I can say the hardest thing to do as a mother is watch my child suffer but God has a reason for it. He is using Jordan to educate people about this disease. And I'm not forcing her to do this, she wants to do the videos and share them with anyone and everyone willing to watch!

Big things are in the works with the help of a little girl. God is using my baby in way I never imagined.

Thursday, February 10, 2011

It's the little things that bring tears to my eyes

video

There was a time when I wondered if she'd ever be able to do something like this. In the past Jordan would jump for a bit then do something else. I knew the next day she'd be in pain and swollen but how do you tell your child she can't play with her brother and friends? We never did. We figured Jordan knew her body and her limits. She quickly learned what happened if she over did it.

Since starting Remicade, Jordan has been doing very well. Her labs are all back to normal, swelling in her joints is gone and she has NO inflammation in her eyes! NONE!!! And she can jump. She jumped for at least 1 hour on Tuesday with my cousins kids. She was tossing herself all over the place and I figured this would be our test to see how well the infusions were working. No pain the next day. She's fine.

Infusions are now spread out to every 6 weeks. As long as her eyes stay quiet and labs look good we'll stay at 6 weeks or maybe even go to 8. She's still doing MTX at home and we're increasing her leucovorin to help with the nausea. We'll see if that helps.

I think for the first time in 6 years she's really pain free. I pray this puts her into remission.