I need advice please. Tucker will, hopefully, be crawling soon. He's on a continuous drip 20 hours a day b/c he can't tolerate bolus or a faster rate. Any tips on how to let him be mobile without pulling out his g-tube? We have a PET kangaroo pump. When I thought of having babies, or even when I was pregnant (at least up until d-day when we found out Tucker stopped growing at 28 weeks) I never in a million years would have thought this was a question I would have to ask. And I have friends who complain when their babies aren't crawling at 6 months or walking before a year--don't you just want to smack those people?

Shae never crawled. She went straight to walking. Usually she'd drag the pump along behind her, or we'd carry it around behind her. It made getting anything done in the run of a day difficult but we didn't have much of a choice. Oh, one thing though, she had a walker and we'd hang the pump off the back of the walker and off she'd go. Once she really started walking well, she wouldn't go in the walker anymore though and we were stuck lugging it or just letting it drag around behind her. Also, she learned to carry it herself when she was very young. It was all she was used to, so if she wanted to go somewhere and we weren't right there fast enough to move it, she just went with it.

I always keep the extension tube taped to her side and up along her back so that if it pulls, it has lots of tape to pull off before it would ever pull the tube out. Once or twice it got pulled hard enough that the tape ripped off, she screamed and it hurt like heck, but it was better than the alternative of the button getting pulled out.

I remember before she started being mobile, I was very concerned about how we'd manage but looking back, I don't remember it being that bad. It certainly wasn't as convenient as having a cordless kid, it did make things more difficult, but we got through it and you will too.

She's under two in this pic:
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Max was also fed pretty much continuously. Basically when he was awake and on the pump someone was always with him to carry the pump for him.

He's walking now and fortunately, he can now have a couple of short breaks during the day so we get a break too! If he's awake and on the pump I try to do stuff with him like stroller walks or quiet activities (though that doesn't usually work now that he's a toddler!)

We have an Enteralite pump which we find a lot more portable than the Kangaroo one we had initially.

Hopefully as Max gets better at walking and stronger, he can carry the pump himself.

Vicky

Luckily, Daniel was a good walker by the time he got his G tube. He can also handle fairly fast feeds, so most of his tube time is spent in his booster seat while he tries to eat orally. But when he's done "eating" he pushes around his pump on the IV pole. Or when we're out and about, he wears his backpack. D has an entralite infinity, which is very small.

We had the same problem at first. Emily was 3 months when she got her tube. Emily just pulled along her pump or we folowed it around the whole time. We did the same thing as Roni and put extra tape on her back so it would not pull her site. Just make sure you get the tape off before the wash keeps it on there forever. The craziest thing about all of this Emily is an early walker. So now she just drags it or we still follow, and on occasion she will carry it. Its pretty funny. We are trying to work on getting her to get used to the feeling of her backpack. Maybe one day we will get there. I wish you luck. I made it through and if I did you can also have faith. The crawling stage doesnt last forever till they walk.

Here are some things I have found that work. Alex is hooked up to his pump all day so we have had to be inventive. I wrap an ace bandage around his waist to really keep the tube secure so that when he moves, the tube doesn't wiggle and irritate his stomach. Then I pin his tube to the back of his shirt. I wrap a piece of surgical tape around the tube and then use a safety pin to keep in in place. We also finally got an Interalite Infinity pump that is small enough that he can drag it behind him without it tugging on his tummy. He won't wear the backpack.