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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.

Friday, December 2, 2011

"You have BEAUTIFUL ankle bones!"

That is what Jenna's rheumatologist said to her at her 3 month appointment this past Wednesday. "You have BEAUTIFUL ankle bones!" Who would have thought that would be music to our ears? Before she started her exam I told her that while I don't think Jenna is at 100%, I still feel she is the best she has been since her diagnosis in August of 2008. After examining Jenna, the doctor agreed. Jenna is doing GREAT. I expressed my concern over the fact that she is still experiencing periodic pain and stiffness. When a storm blows through, when the temperature drops, sometimes when she wakes up or after a car ride. I asked her, "Is this just her normal? Is this okay?" She assured me that yes, this is okay and perfectly normal. Even a child that goes into remission can still experience all of this. She does, after all, still, have arthritis. Even if she hits remission, she won't be cured. Sadly, surprisingly, this is music to my ears. I could not be more happy. She does have an awful lot of tightness behind her knees. Again, perfectly normal for a child with arthritis. Her homework before her next appointment is to get that stretched out and be able to at least reach her ankles with her fingertips. Right now she can't even sit up, she is so tight. Now, you may be thinking, "Wow she is doing so great she must be ready to taper meds!" Yeah, nope......read on.....

Jenna also had her 3 month ophthalmology appointment on Wednesday. We didn't get terrible news, but it wasn't what I had hoped and prayed for either. After nearly two years of hearing Dr. Wallace say clear and quiet, I heard the dreadful word CELLS. She isn't in a full blown Uveitis flare right now. He assured me that this could go either way. We could come back and she will be in a full blown flare. Or, these few cells could just go away all on their own. Not terrible, but not so great either. Had her eyes still been clear and quiet both doctors would have been comfortable tapering meds. Not now. These few cells have taken that chance away. Even when we go back, if they are gone, it will be risky to try tapering now. We are so blessed with amazing doctors. Dr. Wallace took the time to very patiently reassure me that since she isn't having any major, adverse side effects from the meds she is on, keeping her on them right now is really the best thing. Overall she is doing well on them, taking her off of them right now could be disastrous. We are also blessed that he understands the dangers of steroid eye drops. We are not putting her on a course of drops at this time. We are waiting to see what happens. When we go back to have her rechecked, if the cells are still there, then we will start drops. AND GET HER OFF OF THEM QUICKLY. So very thankful that he is educated on this. Sadly, many doctors are not. They, for whatever reason, don't understand the dangers of these drops being used long term. We will need to do a med change to in order to get her off the drops. But we will cross that bridge when and if we get to it.

Overall, I still consider this to be a great day for appointments. Her joints look and feel great! Her eyes have hit a teeny, tiny, minor bump in the road. It will be okay. No matter the turn it takes, I have faith, it will be okay.