GI Update

I just read over some of my early posts from Grayson’s first year. Over and over again, I was worried about his weight. Until he got his feeding tube, he was less than the 1st percentile and was considered “failure to thrive” at a year old. Putting weight on him was a constant, frustrating pursuit. Of course, when he got his feeding tube, and especially when we switched from a G to GJ tube and he wasn’t vomiting up formula anymore, he steadily gained weight and it no longer was an issue. Over the past several months, I cannot even count how many people have told me how much bigger Grayson looks.

This morning, we saw Grayson’s GI doctor for the first time in months, due to having to reschedule the appointment several times. Today, the scale said he weighs 37 pounds, putting him in the 75th percentile for weight, and based on his height, his BMI is over the 95th percentile. What?!

So the tables have totally turned and now we are not worried about him not weighing enough, but too much. Good grief. Relatively speaking to what all Grayson struggles with, this actually is not a huge deal and should be an easy fix; we are going to cut back on the rate of his continuous feeds by 10% and give him a little more water during the day to make sure he’s getting enough hydration. His doctor doesn’t want him to lose any weight, but just maintain his current weight as he grows taller.

Of course, the sad reality of the situation is Grayson is gaining weight because his body doesn’t allow him to move enough to burn calories. He’s no longer able to push up on his hands or get in the crawling position, or scoot around on the floor. He is wheelchair bound (or the equivalent) all day long. So maintaining his weight will be good for him- less stress on his body that is so uncooperative- and good for those of us who have to carry him around the house and hoist him into the car. I know I say this all the time, but carrying him really is very difficult- 37 pounds doesn’t seem like a lot, but it’s stiff, dead weight and Grayson likes to throw himself backwards from his waist. It’s a miracle we haven’t had any accidents.

We also scheduled Grayson’s next tube change for September. Ever since he got the GJ, we’ve had to change it every six months, almost to the day, and it’s always an “emergency”. I asked if we could skip the whole “tube breaks randomly and we end up in the hospital for a night” ridiculousness and just proactively schedule a change, and he agreed. Thank goodness.

That Grayson- keeps me on my toes for sure. And I guess it’s true that when you are a mom, you are always worried about your kids for some reason or another- even if it’s the complete opposite of what you were worried about a year ago. Oy vey.


  1. Reagan Leigh on June 1, 2014 at 2:46 am

    Texas childrens always told us to change out the gj every 3-4 months…for whatever reason, they just can't go as long as g-tubes! We're definitely going to stay on top of that especially since our last change was an emergency room visit on Mother's Day (after letting it go 7 months)!

  2. Erin on June 3, 2014 at 1:19 am

    Oh wow! I am so happy that he has done so well on the tube feeding and has gained weight well! And whoo hoo for a schedule tube change so that it won't be an emergency on I'm sure a weekend day!

Leave a Comment