LIVING

With EoE, Allergies, Asthma and a G-Tube

It’s been a year

Tomorrow will be the one year anniversary of Gage getting his feeding tube or button as we call it. I just reread a few posts from last year this time. Wow, it was a crazy time for us. I have no idea how I got through it. I was struggling, and I still have my days. What mom doesn’t though.

Root Family2013-44Gage is doing great! He goes to kindergarten for a full school day. I hook him up in the morning before he wakes to time up his feeding with his lunch time at school. I pack his feeding tube bag and we drop it at the nurses office every morning at school. She hooks him up a little before lunch and he’s done shortly after. He at first fought the idea of doing that but I assured him no one would know he was hooked up. They would just think he was wearing his backpack. Once he was at school it was a different story. I had his teacher read the tubie book to the class and Gage proudly showed his button to everyone. He is proud of his button. He even shows everyone when he gets a new button patch. He does have a lunch box and I pack him something to eat. He usually doesn’t eat it because the formula fills him up. We’re at the stage right now where he wouldn’t have enough food to eat to replace that feeding at school. He also gets to have snack with his class in the afternoon. He is hooked up two more times after he gets home to equal the 1500 calories he needs. If he wants to eat then we do that instead. Some days he would just rather be hooked up. Some days it’s just easier to hook up.

Gage is up to 7  foods right now. So far he has passed blueberries, rice, tapioca, strawberries, lemons, cocoa, and green beans. We are currently trialing fin fish, black olives and oranges. So far so good. Getting him to eat the fish is a little hard. He doesn’ really hate it or love it. I make sure and get some in him once a week. We have found some chocolate he can have that’s safe. It is expensive but it’s safe and he loves it. When your kid can’t eat price doesn’t matter.  All three kids will be scoped the week before Christmas to see if they have passed the fin fish trial. I will honestly be shocked if they do since it’s such an allergic food. I do pray though that they pass.

I would like to point out Gage’s belly button in the picture. If you notice he really has an outie. During the surgery to put the button in the doctor stitched his belly button in so he had an innie. Once we were home from the hospital Gage noticed this and was so angry at me for letting the doctor do that. As you can see though, over time, that little belly button made its way back out. Gage is thrilled to have his outie back.

We are going to celebrate tomorrow. I got Gage a new tubie t-shirt since he has outgrown his. He has gained 11 pounds since getting his tube. Proof he really did need the button. Poor guy just wasn’t growing and getting what he needed to thrive. He even gets some new button patches to celebrate. I am also going to post a great blog about a year with a tube! Stay tuned.

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December 4, 2013 - Posted by | Gage's allergies, LIVING | , , , ,

2 Comments »

  1. Have you tried Enjoy Life chocolate? I’m guessing that would be safe for him and then you can have something a little less pricey (although still $!)

    Comment by Devon | December 4, 2013 | Reply

    • He does eat that brand. He’s just bored with it. The Amanda’s own line has suckers and foil wrapped chocolates. He thinks it’s something different and makes him happy. :)

      Comment by livingtheallergylife | December 4, 2013 | Reply


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