Sick...again!

"Now make sure you keep your hands really clean, do not get near sick friends, wash your hands after playing in centers, and remember to use lots and lots of Purell." Coulby has heard me say this so many times that he has actually started reciting parts of it to me right before he gets on to the school bus to enter the germy world of public schools. In some part of my brain, I foolishly believed that this daily recitation would prevent Coulby from participating in the 'pass-the-virus-on' preschool game, from which he has brought home colds and other assorted illnesses. I suppose Coulby would have to live in a bubble in order to avoid ever getting sick, which we all know is not even an option.

What is my point? Coulby is sick...yet again! He was just sick about a month ago with some nasty stomach virus, which was hard on him, stressful on us, but still managed at home. In the last few days, Coulby has gone from having a runny nose, to being stuffed up, to a nasty cough, fever, and loss of appetite. Dealing with the cold symptoms: piece of cake. Dealing with the fever and loss of appetite: well, that on top of his Citrullinemia is extremely stressful and exhausting. For all of us.

Coulby's body can react to a fever by drawing stores from his body, which can cause excess protein in his system and possible hyperammonemia. We have to treat the fever with round-the-clock Motrin, and also make sure his protein intake is less than his expected daily intake. We also have to make sure that Coulby is drinking plenty of fluids, preferably those with calories. This will ensure ideal hydration and flushing of his system. By keeping caloric intake up, Coulby's body will be less likely to draw from its own protein stores to replenish his system and make him get better.

With all of this said, you can see why we dread Coulby being sick. There is the constant care to make sure he is getting what he needs to not only get better, but also to maintain his metabolic stability. Fear of hospitalization triggers stress. When he does not want to eat, he is not getting what he needs to prevent hospitalization. When he does not drink, he is not keeping himself hydrated and can end up becoming hyperammonemic. The average cold turns into a nightmare.

I pray that we can get Coulby through this cold here at home, and we are doing everything in our power to do just that. Please pray for him. For an appetite. For no more fever. For healing.

Valentine's Day photos

The heart of...

Happy Valentine's Day...well, a day late! Valentine's day: the most estrogen laden holiday of the year. Hearts. Chocolates. Flowers. Jewelry. Cards professing undying love. Um, I do not know how many of you out there get these things each year on the big V-day, but I do not. Not because my husband does not love me. He shows me how much he loves me each and every day. By bringing me a coffee right when I need one. Bringing home a calorie loaded breakfast of Dunkin Donuts. (Yum!) Indulging me. Putting up with my swinging moods and spoiled tendencies and restless nature. Plus, he covered himself for quite a few Valentine's Days when he proposed to me years ago on...big shocker here...February 14!

My memories of Valentine's Days past are good ones. I remember the excitement of picking out cards to hand out at school, and all of the goodies we got to indulge in during classroom parties. And that is still the best part of Valentine's Day--having an excuse to bake all of those fattening cakes and cupcakes and assorted desserts. Oh, and the chocolate! It was always just a day that meant fun. My mom always made sure my brother and I had something at our places at the kitchen table, and she would often make sausage, egg and cheese muffins for breakfast, with the eggs cut out in the shape of hearts. Cutesy, I know, but it was always a great way to start the day. It lead right into the fun at school.

Now it is my turn to give my kids that same excitement every February 14. Coulby had his first school Valentine's Day party last Friday, and I made sure I was there to experience his excitement. The kids all decorated paper lunch bags with self-adhesive foam hearts, heart cut-outs, and crayons. Then they each got to put their Valentine's in each other's bags. You could just feel the childhood excitement of it all emanating off of them. Coulby has carried his bag around the house with him, examining each card over and over again, as if each is a prize he cannot believe he won.

So when I think of Valentine's Day, I admit to thinking about all of the frou-frou gifts we women so love receiving, but I also think of love--the love I have for my husband, and the two loves of my life, my children. They are my true Valentine's!

In honor of February, specifically Valentine's Day, Mindy and I have tackled a photo assignment: The heart of... Above are my interpretations of the assignment. Look for future photo assignments! Happy Valentine's Day everyone!

WELCOME HOME, Corrigan!!

Welcome home, brave little man! After a LONG and rocky hospital stay, enjoy the comforts of your home, surrounded by your family! Breath in the fresh air, and enjoy the freedom of going wireless! Although you did not emerge unscathed, your spirit is unbroken. Sending you hugs, prayers, and many blessings!

Old Man Winter...go away!

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!