A few days ago, I took Grace to the ER because her hand was very swollen and red. The swelling was so severe that she got a huge pressure sore from her glove. I debated whether to take her or wait until business hours the next day and have an office visit with her primary doctor. She said she was not feeling well, though, and she had a 99 degree temp so I took her in.

By the time we got to the ER, her temp was 102.4. The ER doc x-rayed her hand but was more concerned about a bone infection than a fracture given her temperature. When the x-ray and blood work came back normal, the doctor and I were both reassured that a bone infection was not causing her fever. However, the doctor did not want to let Grace go home without solving the problem. He tested Grace’s urine and found that she had a UTI. (Another UTI… bad news. Grace will have to follow up with the urologist and probably have a procedure she’ll hate called a VCUG.)

The next day, Grace had a fever again in the afternoon – 101.8 – and she had bad diarrhea too. She was shaking, and her breathing was gaspy, and it was very scary to see. I was so worried about her – it reminded me all too much of last October, when Grace had what turned out to be a kidney infection and was spiking fevers with full-on rigors for the whole time we were in New York.

The fever was gone when I went to give Gracie her morning medicine. But she had diarrhea again – another reminder of last October, when she had diarrhea for a month during and after her kidney infection. Grace was so sick then. She can’t afford to be that sick again, especially not now when she’s finally starting to recover from her MRSA infection.

In my worry, I wrote a post about the little bottles on my counter, the little bottles of medicines that I give her in carefully measured doses, medicines that counteract the effects of the infection and medicines to prevent complications from the other medicines. Medicines that keep her alive and out of the hospital. I was scared, and that came through in the post. I didn’t publish that post – it was too raw.

I am glad I didn’t. I was so scared, but here it is, the next day, and Grace is acting better. She is still low-energy, she looks pale, and she has terrible diarrhea and a bad rash, but she does not have a fever and the swelling is down in her hand. My girl is fighting this infection and winning the fight. She’s awesome, and I shouldn’t limit her with my worried mama thoughts. She will be fine. Rare disease or not, she will get through it. She’ll grow up. She’ll be a nuclear physicist, or a lawyer, or a musician, or some other very successful person. She’ll have babies and love them well. She will get through every obstacle that comes her way. She is amazing – Amazing Gracie.