Tuesday, March 5, 2013

FINALLY!

It’s March. Jordan’s 11th birthday is in 4 short weeks. For the last 8 years we’ve never had any good news come her way this time of year in regard to JA or uveitis. She was officially diagnosed 8 years ago THIS week, right before she turned 3 years old.

That changed yesterday.

Jordan has been doing really well for a while now. I’m always cautious because with her history, she will go from good to bad in a matter of days just like a lot of other JA kids. Her uveitis has been quiet for 9 months; joints have looked really good for about 6 months. She’s had some minor swelling in her knees here and there but it’s been linked to her level of activity on a certain day or a fall. Morning stiffness is still there when it’s been real cold, and that will never change, but it only lasts at most about 45 minutes.

I’m sure you’re wondering if we heard that magical “R” word yesterday. The answer is a bit complicated. About 2 months ago we decided to lower her daily CellCept dose by 250mg. Jordan, on her own, stopped taking her other daily med, plaquenil. Don’t worry, we had a long talk about stopping meds without doctor input and I have taken away her being responsible for her own meds. Anyway, her eyes didn’t go crazy and she had no swelling. Her body did great. Based on monthly labs, her eye exam on Thursday and yesterday’s physical exam, we are lowering her CellCept by another 250mg. This brings her to 750mg a day. If she continues to do well, we will decrease her another 250 at the end of April. That will give her body time to adjust, 2 rounds of labs and an eye exam. If she flares, she’ll be back up to 1000mg. The only prescription meds she is currently on are Orencia, CellCept and as needed, mobic.

If you’ve followed Jordan for a few years you know that while she isn’t as sick as some other kids with JA, she has had several challenges. I think in 8 years she has only had a few times when her diseases have been inactive but it only lasted 2-3 months before something went off. She’s battled so many infections due to the immune suppressing meds she needs to keep her JA and uveitis in check. Physical therapy, eye drops, shots, blood draws, nasty, NASTY prednisone, way too many failed meds, daily pain for YEARS have all brought us to where she is now. While I want to say she is in medicated remission, it really is still too early to tell. But we am cautiously optimistic that she is headed that way. And if you know me at all, you know I just typed that though tears.



I know there hasn’t been any activity on our blog since October. There is a reason and I will go into that another day. Right now I wanted to share our awesome “birthday” news. 

6 comments:

Lentini Family said...

Oh my gosh I love hearing this! So incredible and at the same time I can understand your reservation. I am really happy for you and Jordan! Thank you so much for sharing good news...hugs and love!

SarahDiane said...

WOOHOOOOOO!!!!!! <3

Cheryl Clark said...

Praying for Jordan! What an Awesome young lady! Jordan, please know that you give me hope as I have been through all the biologics but am just restarting Orencia for a longer stent before calling it no good for me. I hope I follow your example if nothing more than to make the most of this yucky disease and all that comes with it! Don't give up and please continue to set the example even for us adults! Happy Birthday!!

Jeannine Predmore said...

LOVE this blog post Stacey! So incredibly happy for Jordan and for your entire family. It is about time your little girl got such good news. THRILLED!!

Megan said...

Go Jordan Go!!!! Tears of JOY for your family!!!!

KLP said...

Great news- I am so happy for you guys, and hope that it STAYS like this!!! no backsliding allowed!