I wish I could say she was back to normal, or that we've figured out what's going on.
But she isn't, and we haven't.
My pediatricians office considers a temperature of 101 or higher a fever. Lily's temperature seems to spike to a fever later in the afternoon. Her temperature has not been below 99 since we came home from the hospital. Monday it spiked to 102.6 and this afternoon it was 101.4.
I talk to the nurse at the doctor's office daily. They are trying to get us an earlier appointment with the immunologist. Our current appointment is at the end of August.
Lily has continued to complain about pain in her legs. The antibiotic shots she received two days in a row last week are quite painful, but usually that pain dissipates after 72-hours, and that was the case when she had the shots last month. It seems that her joints might be bothering her. This morning she didn't want to step up a curb, saying that her legs hurt.
Joint pain and the fatigue she still has and the fevers could point to a juvenile arthritis. I'm still trying to determine where the pain is from and how present it is. Lily was very opposed to me touching and flexing her leg joints when I told her what I was doing. I'm experimenting with manipulating her legs without warning to see her reaction. A few times she has withdrawn from me but once she didn't have much of a reaction.
If you love a good medical mystery, feel free to Google my kid and give me suggestions of what to check for or consider! Anything is game at this point.
While I'm not overly worried, I am concerned and very frustrated. It's also challenging because Lily is very fussy at times and wakes up with an elevated temperature at least once a night. I want my happy, playful baby back.
I am thankful serious things like leukemia have been ruled out, so I'm not letting my mind get away from me, but it has to be something.