Switch Backs

So, we have been here for a while, as I am sure you are well aware. It will be four weeks on Friday. You are getting better. Getting stronger. Getting more playful and funny. Getting back to yourself. But, it is slow work and not always steady. Daddy thought of a good analogy. . .

Someday you will got on a hike with boy scouts or with our family. Sometimes during a hike you reach a clearing and think, "Wow, I've made it!" Only to realize that you haven't made it and still have a ways to go. You start back on the trail. But it doesn't follow a straight path to the top. There are switch backs. The path zig zags back and forth. Sometimes you even pass ground already covered. It's frustrating, hard work. But, you keep going, wanting to reach the peak and enjoy the view.

Our journey with you the past month seems to have already brought us to "our clearing." It felt glorious to leave the PICU. We thought and were told that we would hopefully be going home within the week. But, we looked up, and have now realized that we still have the rest of the mountain to climb. There are switch backs, lots of them.

The doctors have been trying to figure out your fevers. You still get at least one a day. You have had blood work done, a CT scan on your abdomen and sinuses, urine test, stool test, x-rays of your lungs, ear test, eye test, echo cardio gram of your heart, ultrasound of abdomen and kidneys. Nothing is conclusive. Your white blood cell count and platelet count is up, which usually indicates infection. And yesterday we were informed that your hemoglobin or red blood cell (carries oxygen throughout your body) count is down about 25%. Blood loss. Kind of scary. They say you are either losing blood, not producing blood, or consuming blood. Daddy and I don't know too much about it. And, actually, the docs don't either. You are extremely perplexing to us all. So, I think we are going to be here for a while. Originally, we were told we would get home by Christmas Eve. Didn't happen. I then hoped for sometime before the New Year. Doesn't look like it. I find myself having moments of desperation, thinking "when is this going to end?" Or "will this ever end?" But, we have faith that it will end. We have always known the road would be long. . .but that it would end.

It's seems like Daddy and I are getting more and more tired, but you are getting stronger and stronger. I'll take that trade off any day :) You went into the playroom this morning and did some assisted crawling and walking. You had a great time. Rebecca, your physical therapist, said you could go to the gym tomorrow and climb and slide and scoot. That should be great. Although, it is frustrating right now and we don't see our "peak", we do have our little William back in so many ways. You smile, laugh, play, cry, complain, flirt, hug, and love. I'll take whatever you have to give, and patiently wait for the rest. Keep fighting, little superman. And tell your little body to send some better clues and hints to the doctors, okay?

I am loving you always.