Weekend

Jeff and I celebrated our anniversary in Ouray. Jeff’s parents drove from John Day, Oregon to watch the boys for an extended weekend. We really appreciate their generosity in doing that for us. It takes them approximately 16 hours to get here by car. Jeff and I hiked a couple of almost-five-mile-trails and visited the hot springs. We returned to some good news: Zane’s ultrasound of his kidneys and liver is normal (no tumors). Obviously, we are very relieved.

The G-Tube

This is not the first time it has happened. Actually, it has happened a number of times: in The Children’s Hospital cafeteria, at the pediatrician’s office, at home. It has become another one of those typical things with Zane, much like brushing his hair or clipping his nails. His gastrostomy tube button—the one that plugs in the hole in his stomach—came out. This time, however, he lay in a soaked mess of formula and water. I hadn’t noticed it’s disappearance from his stoma area until I went to remove the tubing. Instead of looking at the Nutriport button, there was the reddened hole. Thankfully, it was still open enough to reinsert a new button, fill the balloon with water, and move on with the rest of our day.

In the past, anything medically related would cause a feeling of queasiness to rise from within. I even have been known to pass out. Now, it is just another one of those things that I have to do. Many times—including today—I am the only one here to do it. And, if the button isn’t put into place, Zane doesn’t get fed. The longer it is out, the greater the chances of it closing up (like an ear piercing, I guess). So the reinsertion of gastrostomy tubes is now a part of our new normal.

Here We Go Again

It’s that time again. I’m not talking about flu shots (although, those are on the horizon, too); I’m talking about Zane’s renal and abdominal ultrasounds. Last year, the geneticist from The Children’s Hospital suggested that we begin screening Zane every three months for Wilms’ tumor (kidney cancer) and hepatoblastoma (cancer of the liver). There is a greater incidence of these two cancers in children with Trisomy 18. The geneticist told us that Wilms’ is a fast-spreading cancer, so he wanted us to have Zane frequently screened. However, we have elected to have an ultrasound every six months. He’s due for another this month, so we have an appointment set for next week.

This is one of those things that most parents do not have to concern themselves with. We certainly didn’t think about such weighty issues with Justin. With Zane, health concerns are chronic. While we may be able to push them to the backs of our minds during a healthy run, they always tend to resurface. There is always an underlying worry tied to Zane and his extra chromosome. While none of us know what lies ahead for ourselves or for our children, it is far more uncertain with a trisomy. We’re just hoping for another reprieve—to be able to breath another sigh of relief—after the results of this upcoming ultrasound.

It can be a definite roller-coaster ride at times. A ride that would be nice to abandon in the rear-view window for awhile. A ride that we’d give up forever if it meant a totally healthy Zane. But one we won’t abandon because we need to stay on it for our son.