There is so much more to living with a Urea Cycle Disorder than originally meets the eye. Sure, there is everything I have mentioned to this point, but there are several "little" things that, in relation to UCD's, can be catastrophic to the metabolic balance. Some people love winter, some could skip right over it, and I am somewhere in between. I love the beauty of the season, and the many wonderful photo opportunities it provides, but I can live without the cold...and the GERMS!
We have always tried to limit Coulby's exposure to germs that can wreak havoc on his body and land him in the hospital, but germs are everywhere! At the grocery store. At home. In the classroom. Everywhere. I go out in public and when I hear someone coughing, I hold my breath and quickly steer Coulby in the opposite direction. People sneeze and I cringe. Conversations not meant for me grab my attention when there is any mention of "flu," "stomach virus," or "Oh, I am just getting over (fill in the blank)." And when someone in the family is sick, they know not to come anywhere near our house. They will be left out in the cold! We just cannot afford to risk Coulby getting sick. It could end in a hospitalization. And you bet we all get our flu shot every year!
I guess most people do not understand, but anyone living with a UCD knows that illness can cause excess build up of protein in the body, which, when maintaining a balance of a low protein, high calorie diet, can devastate that balance and lead to hyperammonemia. So we dodge the germs, or try to, and routinely use the many varieties of hand sanitizers on the market these days. And anti-bacterial cleaning sprays, wipes, and otherwise. You can say we are germophobic. I am a big fan of the new Germ-X foaming hand sanitizer. And Clorox Anywhere Spray. And Clorox wipes (they are great for wiping down public eating surfaces and germ-infested grocery carts).
So I love the beauty of winter, but it forces everyone to stay indoors and spread the germs around. You can imagine, then, how anxious we were when Coulby started Pre-K last fall. And he has had more than his share of illness since he started school, but we have been blessed to be able to manage each one from home. Not that it has been easy, especially during his most recent illness, a stomach virus, that stole his appetite for over a week and lead to one trip to Hopkins ER (to check his ammonia, which turned out to be fine) and many phone calls to his nutritionist and geneticist.
I read the disappointing news that Punxsutawney Phil saw his shadow today, so there are six more weeks of winter in our future. Ugh! I, for one, will be anxiously awaiting spring and the fresh air that comes with it. The circulated air. The not-so-germ-infested-air!