We finally had our follow up visit at Scottish Rite a few weeks ago (August 26) and I'm sorry I'm just now updating. Great news, she does not have Periodic Fever Syndrome which is what we thought she had way back when, her genetic testing came back negative. The rheumatologist said she still wasn't sure how her fevers fit with the arthritis...but it definitely fits somehow. "Normally", the fever that is associated with arthritis spikes at the same time daily and obviously Molly doesn't present that way, she does things her way! The good news is the fevers seem to be well controlled with the Naproxen and Methotrexate, in fact they were almost gone (except for the one while we waited on the Methotrexate refill). The other great news was she showed NO inflammation when we went, so although we were seeing signs and symptoms that she wasn't feeling great again, we're confident now that we're back on the Methotrexate she'll be good to go. Although it was frustrating trying to get the refill for 6 weeks, I think that was God's way of showing me that she definitely needs that injection...I had been questioning because she did so well but I wasn't convinced it was because of the injection. Now I can say "OK, God....she needs that weekly injection, even though it's hard to give it. I will suck it up and give it to her." I have to admit she takes it like a rockstar now, with no tears and minimal crying. We now call it a "shark bite", that's what she started calling it during shark week and gave us all fake shots with the toy syringe. So for now, we're just chugging along like nothings wrong with her, she rarely complains the last couple of weeks.
She's also started a Mother's Day Out program so she gets to go to "school" 2 days a week. She's not loving it right now but she gets better every time she goes. Although she has them fooled into thinking she's a princess or something. Her teacher says she won't drink unless they hold her cup for her and she won't eat unless they feed her. She's a smart little girl who knows how to work the system, so I've informed her teachers to let her go hungry or thirsty...she is more than capable of doing it herself.
