[blindkid] questions about g-tubes

Jessica Kovacs jessica.kovacs979 at gmail.com
Sun Apr 12 14:41:55 UTC 2015


Hi Anita,

My son is blind and has a g-tube, I am sighted. It's really not hard to deal with but it can get a little complex depends on what they eat. We started on formulas, moved to elemental formulas because he had difficulty tolerating them, and then finally started doing blenderized food through his tube. My son got his g-tube at just under a year old. He was exclusively g-tube fed for a year and then we started intensive feeding therapy. As he began to eat by mouth we moved from using a pump to doing bolus feeds. Usually your insurance pays for the pump and your medical supplies. We get monthly restocking calls from a medical supplier, but usually you are on your own for purchasing formulas, even medically necessary ones. 

We were always able to do feeds more like a meal (6 times a day, then 3 or 4 times a day) because he could tolerate the volume. Then it's more like regular eating as opposed to . Bolus feeds are much simpler and you don't have to deal with the pump which can get clogged. But the pump does beep when there's a problem. Once you get the hang of using the pump I think you will be fine. There's a bit of a learning curve, sighted or blind!  

Depending on the age of the child, they may be able to help with g-tube. Towards the end, my son was able to hold the bolus tubes and other items for me as we did a feeding. It's really quite manageable. Feeding time was also a nice bit of time where you are forced to slow down and sit together. I did love that! 

I've written a lot about Tom's g-tube and feeding therapy on my blog. He's a link  http://www.thomasmarshalldoesitall.com/g-tube-feeding-post-collection/

Jessica


On Apr 11, 2015, at 8:00 AM, blindkid-request at nfbnet.org wrote:

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> From: "Anita Adkins" <asadkins at frontier.com>
> Date: April 10, 2015 5:26:16 PM EDT
> To: "\(for parents of blind children\) Blind Kid Mailing List" <blindkid at nfbnet.org>
> Subject: [blindkid] question about g-tubes
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> Hello,
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> I am wondering what is involved with caring for a g-tube. A friend said it might not be too difficult as a blind person. I am looking to someday adopt, and one of the little boys on adoptuskids.org I am interested in has a g-tube. Thank you in advance for any assistance. Anita
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