Heading West

Oliver runs hot. His little forehead always feels warm which always causes me to have a heart attack, especially around the times he is "due" for a fever. Fortunately, one has not come. If he had not had his surgery he would have had 5 more episodes by now. In total he has only had 5 episodes total and for some reason this is all very significant to me, that an episode did not show up on the 23rd of Sept. and instead we got to spend that day traveling to Mesa Verde and swimming in some hot springs. That week we got to explore the dwelling units of the Ancient Puebloans, climbing 32 ft ladders, crawling through tunnels, watching the mule deer and the sun set while perched above the mesa tops. We got to go to Lake Powell and the boys got to go tubing and cliff jumping and we were not curled up on a bed crying that his legs hurt, that his stomach was in pain.

I am on some support groups for parents of kids with PFAPA. Studies show that kids who have a tonsillectomy go into "remission" and 65% never have an episode again. I ache for Oliver to be in that 65%. The kiddos that have to deal with episodes week after week, some with mouth sores that fill their tongue and cheeks or others with mysterious side effects such as blistering rashes that may or may not be associated with PFAPA, or another periodic fever syndrome, but that leaves scars all over their little bodies have my heart and their parents have my empathy. We had such a brief glimpse of what it is like to deal with a chronic illness and though it wasn't fun, I hope to never forget what those parents are going through. When I walk the halls of doctors offices, to be ever so thankful that we have these services, and yet  never forget some families have to deal with this system, the waiting, and worrying and the caring as a daily part of their lives. I want them to know they have my heart.


Oliver seems to have forgotten about his episodes. He does remember the surgery, but thankfully in not such a bad way. "Mommy, remember when I got to eat a lot of pudding and play a lot of video games? I want to do that again. I want another ton-sillll-ect-my."

Not now kiddo, we are heading West.