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We Knee-d Answers!!

Well--here I am again with another update on Lia.  Dr. Akin (rheumatologist/St. Paul) called today and cancelled Lia's steriod injection appointment set for next week.  She feels that, after talking to two radiologists, and the orthopedic surgeon that maybe we aren't dealing with arthritis after all.  {Insert LONG, exaggerated, eye rolling, sigh}.  I'm sorry--what?

Yep, the radiologists are concerned that the spot on her tibia may have grown into her leg muscle.  If that is the case, it will need to be removed.  She also mentioned that synovial chondromatosis may be back in consideration. {head swirling}.  She also mentioned tuberculosis.  Yes, tuberculosis.  We are going tomorrow to Lia's pediatrician to get a test for that.  Apparently it can be associated with joint issues. {head shaking}.  Dr. Akin is going to summon a few more opinions before she makes any decisions on what to do, which she also said may STILL be knee injections. {counting to 10}

In the meantime, we have had Lia's eyes checked for inflammation, and none was found.  Silver lining:  She has perfect vision.  

I have no idea whats going on, and apparently nobody else does either.  I'm frustrated, and annoyed.  I just want things to be better.  The first two weeks on Naproxen have been ok.  Lia hates taking it, and I feel like it works for a while, but not long term.
Poor Rapunzel (that's the princess name shes going by today).  Really hard time walking today and it never seemed to get better.
At Dr. Spencer's checking for eye inflammation--none found.
 In other news, because life does go on, my 4th graders are amazing.  I am so happy with my change back into general education.  When I'm with them, life is normal for 8 hours and I forget about things going on outside the room. We wore blue on Monday to 'Stomp out Bullying' and each of them completed 3 acts of kindness.
Bully-free zone.
And I couldn't leave this off.  Jack enjoying some very special pancakes.


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