The Wall is always a must and yeah, it's pretty cool
Also time to look around the gift shop and hear the kids ask for things that they absolutely do not need...but that I'm still tempted to buy! Who doesn't want to snuggle with a 5 foot long bright green stuffed alligator?
The kids got to enjoy the sight of two baby pigeons in their rocky nest outside the window of the waiting area.
and then we got called back.
We love our Rheumatologist, Dr Rose, he is a man perfect for his job. Even when he's telling you things you don't want to hear, his manner is so gentle that it does sting just a tad less. You know he's good when the kids are eager to see him and exchanged handshakes and high fives.
The Good: We have been concerned over SP's gait, she just seems to roll her ankles in or even do a mincing type of run.....Daddy says it's her "girly run". Well the verdict is she's fine. Nothing physically wrong just she doesn't fully extend her feet when running.
Her knees continue to look good, from time to time she complains of them hurting, and since the one flare-up we have been hyper-vigilant in checking them over.
The Bad: Her right wrist is puffed slightly, possible sign of inflammation. Her neck is not showing full range of motion, when she looks way up she arches her back to do so. Xrays were suggested along with a follow-up in Sept. He doesn't want to start her on anything because of how close to eye surgery (August 20th) she is. This will give him time to look at the xrays and reports, time for surgery and healing and time for us all to regroup.
In typical SP fashion she took it in stride and put a positive spin on things. "Right wrist? Good thing I'm left handed!"
Man I love that girl and wish I could look at things so optimistically!
The Sad: Knowing that more joints are affected, and knowing more limitations will be placed. As much as we want the sky to be the limit for our children and their dreams, the reality is living with JRA/JIA and the damage it does to joints is long-term and will affect a child the rest of their life. One arthritic toe isn't a big deal. Having the cataract and all the eye procedures? Well SP will never be an Air Force Pilot....not that she has expressed a great interest in such things, but at one point when driving past the AF Base that question did indeed come up.
Seeing your child strap on a lead apron over their pelvis and happily hold still, smiling the entire way through xrays with trusty Eeyore by her side. Knowing the dentist wants xrays in October and putting them off because you want to space out the surgeries, xrays, procedures, in hopes of staving off any potential problems or side effects. SP's hair is still very thin, I wonder if from repeated anesthesia.
Knowing summer vacation is dwindling and wanting to squeeze in as much fun as possible before surgery and recovery take over the last remaining week before school starts.
I long for remission and some peace. Agreeing with your child that this is not unfair and flat-out stinks is one thing...but I want to scream, I want to blame myself...something I did while pregnant, something, anything! but why my girl? Like most parents I would gladly take this all on myself if I could. But I can't.
I hope and pray that SP's joy is never dampened by this and that she always remains the cheerful, sweet character that is so her!
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