Saturday, March 14, 2009

A Nice Walk

Everyone's asleep but me.

I took The Boy for a walk to the comic book store, cleaners & Quick Chek (when The Preggo wants chocolate chip cookies, The Hubby gets her chocolate chip cookies), and he fell asleep on the last leg of the trip. That's fine. I maneuvered the stroller inside the house (trickier than it seems, as the wife's car is in the garage) and left him downstairs to sleep. The Wife took the opportunity to nap while we were out.

This morning, we went out to breakfast at the diner, as we enjoy doing on Saturday mornings. It went fairly well, with the exception that The Boy's appetite and food choices have again shifted. I wonder how much of that is normal toddler capriciousness and how much of it is chemo-related and radiation-related. Yesterday, he ate, like, two full eggs and half of an omlette. Today, he ate one egg and not much of anything else. Not much of a lunch, either. zomg - I hope he's not coming down with something.

We know that his counts are low and lowering as a result of the radiation. They were still within acceptable bounds on Friday, and we're going in for more counts on Monday. He seemed to come through the radiation pretty well, all things considered; but we won't know the real effect on his counts for another day or two. We're on track for chemo next weekend, with the possibility that the chemo will be the following week instead. Since this is a five-day, if we don't start chemo on Friday, we might start it the following Wednesday instead. We have to spend three weekdays in the hospital, so it doesn't really matter if it's Wednesday through Sunday or Friday through Tuesday. I know that next week is a heck of a lot better than this week; I could not have envisioned a chemo stay combined with a grueling show schedule. The only thing happening next week/end is the finale of Battlestar Galactica, which - while important - is not necessarily something that requires a lot of family planning time. The past two weeks, being busy every night until 11 or so, has required a lot of family planning time.

He's walking a whole lot better now. When he's not tired or grumpy, he will usually walk to wherever he wants to go. It's cute: he takes five or six steps, falls on his butt, pushes himself to standing, repeat as needed. Occasionally, he gets going for a long time without falling. The biggest issue is the "drop foot" or "duck walk," which is a direct result of the vincristine and, hopefully, reversible. What has happened is that he has significant nerve damage in his hands and feet, and he has a lot of trouble controlling and moving the toe-half of his foot. When he lifts his foot to step, his toe dips toward the ground. This means that he has to lift his knee and his leg higher so that he doesn't trip over his feet; therefore, his walking style is more complex than it needs to be and also more difficult to execute. He is, after all, walking with the figurative leg tied behind his back.

We're under physical therapist orders to tickle his feet, which I will gladly do. We need to do anything that will encourage him to flex his feet and his toes so that he develops the feeling and the control.

He has figured out how to climb into and out of our bed, which makes things a bit more difficult. He won't just rest with us unless he really feels like resting; instead, he'll wander around the room and play with the DVD player, the clothing drawers, our clock radios, etc. He still wants to relax with me and to nap with me in the afternoons, for which I am continually thankful. The snuggle time is worth its weight in gold.

We are a happy family. Even through all of this crap, I consider us to be a very happy family. My relationship with my wife is strong. The baby is happy and fat; he laughs a lot and enjoys playing with either one of us. We do lots of fun things as often as possible, like horsey rides (on Daddy, not horses) and reading books and going for walks and going to the library or the comic book store and meeting friends and the rare play date. It's certainly not a normal or conventional family right now, but we're doing fairly well. We do need to watch less television, but - considering the amount of time that The Boy needs to be relatively immobile - that's not the worst problem we could have.

3 comments:

Cate said...

A very happy family is the best and most important thing out there. Quite the blessing.

Jennifer said...

I can't tell you if the appetite thing is related to the illness, but I can tell you that my toddler has similar eating habits. Some days she'll eat like we've never fed her and other days she just nibbles. She also changes her mind on what she likes and doesn't like sometimes.

I can tell by reading the blogs that you two are a strong couple.

the mol said...

In all fairness, it isn't as if I sent you on an emergency cookie run. I knew you'd be passing the Quick Chek anyway, and they do have really good cookies.