Monday, May 2, 2011

My kid has done her time. Enough is enough.

Well, little Miss Jordan Lynne is trying to flare. In addition to the inflammation in her eyes, she has some swelling in her hands. Labs are starting to climb as well so we increased her Remicade. We'll see how her eyes are in 4 weeks and then we'll see how she is doing overall in 6. If she still has some inflammation going on, she'll be going back to infusions every 4 weeks and we'll need to up her MTX back to where she was a few months ago.

Dr. G and I also decided that Jordan needs to start PT again. Jordan has adjusted the way she walks/moves because of her pain. Her leg and ankle muscles are extremely tight because she guards her knees when she walks. I don't know what she does, how she does it or how long it's been going on but we need to fix it. I should get a call this week from the peds PT department and we'll schedule her appointment.

Today while we were at the infusion center I decided to take lots of video clips of Jordan's day. Matthew was under the impression that it's a "fun day" when she goes. He now knows different. Having to sit there all day hooked up to 2 machines is NOT fun. So, I put a few of those little clips together for him. Jordan loved it and asked if we could put it to music and upload it to YouTube to share with everyone. Of course I said yes! So here is a look at Jordan's day at the clinic.


7 comments:

Suzy said...

Poor J, I'm sorry Stac your right she has been through enough. ((HUGS))

~Mariah~ said...

I thought I would come check out your blog after you left a comment on mine. Thank you so much for sharing Jordan's Remicade day - it is JUST the kind of thing that we need to increase awareness about arthritis. OA is serious and painful, but those of us living with autoimmne versions of arthritis are generally dealing with something very different. I started dealing with arthritis at what I thought was a young age (25) so my heart goes out to Jordan and the other amazing kids who battle arthritis right from the start.

If it would be all right with you, I would love to re-post Jordan's remicade video and a link to her blog and yours on my blog. Until we can get the Arthritis Foundation to actually work on "awareness" we just have to try to spread the word ourselves!

~Mariah~ said...

Oh - and of course I mean that if it would be ok with you AND Jordan!

Anonymous said...

Crazy, crazy.....but I have a daughter that is 8 years old named Jordan that was recently diagnosed with JRA this February. She is the youngest of 4. I feel like it has been a nightmare for her (and all of us)....would love to talk with you about what I should be expecting to come in the future. Right now she is on Methotrexate, mobic, and they want to start enbrel. Good luck!!
Kristi- run4fun100@hotmail.com

Deetipton said...

Oh no! I hope you can ward off the flare before it gets too bad! Poor kid :( It just isn't fair. She's such a brave little one! Hugs to you both!

The Stitching Coop said...

Thank you & your daughter for sharing her video. Perhaps if more people could watch these video's, scan our blood work numbers and look at our outward symptoms, they might become more aware of this disease and how hard we battle back every day just to stay in the day. Hugs to your whole family. Tammy

Jessica said...

I saw this a while ago when it was posted on "Friends" but never got the chance to comment... Jordan, you are one AMAZING little girl!! You're so brave and very wise beyond your years, certainly an inspiration for me. Keep fighting girlie and hang in there!! :0)