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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Thursday, September 8, 2011

The Eyes

 So, the GREAT news is that her eyes remain inflammation free! I am still so stunned by this. That means that since December of 2009, the Uveitis has not acted up for her. That is incredible given the difficulty we had getting it under control. The combination of Humira plus Methotrexate continues to keep her eyes healthy. It amazes me, it brings me great joy, yet I can't help but also feel a bit of guilt. You see, it isn't so easy for everyone. There are still so many little ones that struggle to find the right combo of meds to tame this beast. I hate that. I feel so lucky, so very blessed. And again, I must stress, to ALL of those that doubted and STILL doubt our move down here, had we stayed in Maine, this would NOT have happened.
Since her eyes are still healthy, we are not comfortable playing around with her meds at this time. Despite the fact that her joints continue to flare off and on, it just isn't worth the risk to her eyes to play with the meds. I called her rheum office and scheduled her 3 month follow up and asked that the nurse please speak with Dr. V about keeping meds the same for now. I got the call back before days end. What a relief, she is FINE with keeping her on the MTX and Humira for now and we will see how she is at her appointment in November. PHEW!
So for now we wait and see, again, what this disease will do. It is so hard to just let things be. To not be hyper vigilant, always on edge, questioning every little thing. I don't even know how to explain it to someone with a healthy child. But, for now, I am going to just let things be as they are. I am going to try not to ask her every morning, every afternoon, every night, "How are you? Are you okay? Are you sure?" I need to back off. I need to TRUST that if something is wrong, she will tell me. We'll see how this goes.
She was so upset about missing art class AGAIN this week. It's her most favorite enhancement class. What a pleasant surprise this was. The Art Cart was out at Duke Eye Center. :o)

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