Wednesday, July 6, 2011

Wait... weight

For children with cerebral palsy, weight it typically an issue... something that you spend a lot of time worrying and thinking about. For a long time, we struggled with Will's weight before finally making the decision to have a surgical g-tube placed. Since Will recovered from his surgery, we haven't regretted the decision to get the g-tube. It has made Will a lot happier (because he is getting adequate nutrition) and us a lot more relieved (because we know he is growing, and because we don't have to stress about how many calories per day Will has consumed, and how many he has vomited).

Will eats about 75% of his calories via mouth during the day, and gets about 25% of his calories overnight with a feeding pump through the g-tube. All in all, it is going very well. Sure we have had a couple of nights when the g-tube comes undone and floods the bed with Pediasure, or sprays the wall with the sticky sweet formula. But those events are few and far between.

Our pediatric rehab doctor wants Will to be in the 10th percentile for weight and height. This is considered a healthy size, but also enables care givers to move him around with the most ease possible. We ensure that Will gets the nutrition he needs to maintain healthy growth. And growing he is!

At his 4th birthday check up, Will outweighed Luke by almost 2 lb. In recent weeks, we have had to adjust the supports on his wheelchair and stander because it appears to us as though he has grown about 2 inches since April. Everyone comments on how tall he looks, and we always try to deflect by saying that part of his height comes from his pointed toes... but the truth of the matter is that Will is a good healthy height (taller than Luke!), and only getting taller.

As excited as we are about Will growing, this brings up a whole new set of concerns. As I have blogged about before, Will loves to be held and loves to ride around in the hiking backpack. As it is, I struggle sometimes to lift him and Nate is the only one who can carry Will around in the backpack. And he's only 36 lbs. Perhaps 36 lbs doesn't seem that heavy to you, but remember that Will has very little muscle tone, so he isn't helping you hold him at all. He's a 36 lbs and 40" tall limp sack of potatoes. With gangly limbs.

With each passing month, our once-weight-challenged little boy grows. And the more he grows, the quicker the back and shoulder pain come from us picking him up. Not that we're complaining, because the joy that he shows when sitting on your lap, or flying through the air, or riding in the backpack make the pain fade away. But what happens when he's 7 years old, 50 lbs and too tall and heavy for the backpack? I know these are issues to face in the future, and I shouldn't worry now... but I just hope that we're able to find a new way to bring Will the same joy then... when we can't pick him up nearly as much. When the question becomes more of "how do I transfer him from his bed to the wheelchair?" rather than walking around with him on our shoulder as we get him ready in the morning. And what about bathing? Entertaining him when he's cranky? The list of concerns gets longer as I allow it to.

I try not to allow it to. I'm not pushing time by. But its just something else to think about... weighing on my mind.

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