Friday, February 24, 2012

A Walk to Remember

Well, it certainly has been a long road. Now it seems like we will finally get what we’ve been waiting for. We are slowly going through the steps to admit Elyza into a program that will finally get her off her feeding tube. Paper work, lots and lots of paper work, plus raising money to help get her to NJ. A close friend of Patrice has setup an account with Wels Fargo bank, to help raise money for this treatment. The name of the account is “help Elyza eat.”. We are both excited and nervous, excited to get her off, nervous that something may go wrong.


  1. I read your story on KSL and wanted to offer some words of encouragement. I too have a daughter with multiple health issues. She too has a feeding tube, and we struggled with her weight gain for a long time. We had her on Peptimin Jr., a formula that was partially digested so that her tummy could handle it. She still had episodes of vomiting and I grew more frustrated every day. Finally, I happened to meet a women who also had a child with multiple health issues and a feeding tube. She had similar issues with her daughter and vomiting and told me to try regular food. What she did was combine ingredients such as sour cream, butter, spinich, anything fattening and healthy and would blend it up and syringe feed her through the g tube. The reason? You can get a lot of calories without filling her stomach up to the point where they vomit. I tried it and it worked! You have to use your best judgement, we still gave our daughter the formula but cut back on it and started giving her more real food. Our daughter also has heart issues so you have to be smart in how much and what kinds of fatty foods you feed her, but best part is that it stays down. Also, what kind of g tube does your daughter have? Our daughter has a non balloon button, and she leads a pretty normal life. We requested it, because we hated the long extention one. There are options for you, you just need to tell the Doctors what you feel your family needs. They are pretty open. But if they aren't then you need to find a new doctor. I have so much more we could discuss, so if you need anything just email.

  2. I also saw your story on KSL which is very touching to me because we had twins that were born prematurely and were extremely small and were on feeding tubes to get them to eat more calories. Just like your story they were vomiting and were supposed to be on for just 14 days and after a couple of months they would no longer eat anything for us. We were desperate.

    Fortunately we came across a blog of a family in the same situation (I can't find the link anywhere) and they received services from University Hospital of Graz, Austria ( It turns out that because our girls were getting too many calories they were never hungry. Following this families instructions, another on-line article (from Pediatric Nursing link below), and under the supervision of our occupational therapist and pediatrician we decided to wean them from their formula by gradually replacing it with pedialyte and within 3 days the twins were completely off the feeding tube. We had to initiate this, the doctors had no clue how to wean the twins. We were told that one of the twins would be on a feeding tube forever because she has cerebral palsy.

    Please see link below for instructions:;col1

    Granted the twins are still small and some doctors give us a hard time, however they are growing. And we will never go back to the feeding tube again. We believe American doctors don't realize that some children are just small and that's okay. Please call me if you would like to talk 801-754-1656.

  3. I found the original blog that got us thinking about weaning the twins from their feeding tube. Go to

    Good luck! Our prayers are with you. You have a beautiful angel for a daughter.

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