Thursday, February 10, 2011

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

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.


Deetipton said...

YAY!!! I love reading posts like this one! I'm so thrilled to see that the Remicade is working for her! How many infusions has she had now? Emily's been on it since October, but her joint stuff is now what I worry about the least. Her joints are usually pretty good- it's the muscles that worry me now. I've heard that Remicade is pretty amazing. It seems to do the trick for so many kids. I pray for remission for her & all of our kids! <3

Stacey said...

I think she's had 6 or 7 infusions. Jordan started on 11/1. She went every 2 weeks then every 4 and now she'll start going every 6. I hope and pray that this will finally kick it. Her eyes are the bigger issue and what I worry about most. Of course, I don't like to see her in pain but I don't want her to go blind. I know this is probably a life long fight for her. Really for most of our kids.

Kristie said...

Yeah! Congrats! that is wonderful!

Deetipton said...

Yeah :( I can understand that. We've so far not had any eye issues, but I've thought about it a lot. (I have a bad problem with empathy and over-analyzing.) Hopefully this does it for the eyes. It seems like, as long as the correct dose is used, it seems to do it for most kids. Emily says that her joints don't hurt right now. I think it she didn't have that dern Prednisone tummy she'd be feeling pretty good.