As a newborn, she would vomit at least 3-4 times daily. That number has dropped to maybe once every few weeks. Mostly, she would have issues with food in her mouth causing her to fall into this tailspin of gagging and vomiting. We’ve been using her feeding tube more to offset this sensation she gets when eating. The tests she had included an upper GI, full abdominal ultrasound and a few others. We hope to get the results next week.

Overall, she has been doing great. Her developmental skills have been booming in the past month or so. We believe that most of it has to do with the fact that her 1 year old sister is running circles around her. Kendall is now pulling up into a standing position, starting to climb stairs (uh oh), and is processing (at a distance) that there are barriers for her to get to where she wants to be. It’s the little things that we take for granted…

Wolf-Hirschhorn Upper GI

Kendall In the hospital.

Kendall Wolf-Hirschhorn Syndrome

At home visiting with the home tour photographer!

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5 Responses to Kendall Undergoes Upper GI

  1. christy shields says:

    Hi Kevin, first I would like to tell you that Kendall is lovely! I have been reading a few of your older post on her and some of them have me thinking. I’m just learning how to manage through this site so I’m not sure if this is the appropriate place for me to ask you some questions or not, so I want to apologize in advance. I have read you talking about gagging and chewing with Kendall. Can you tell me more about these issues? I’m asking because my daughter gags a lot when she is eating. She also does not chew her food very well. I do not feed her a lot of meat because of this and I have just thought that it was just her not liking the taste of some foods and that it is just going to take some time for her to learn to chew her food. Is this something I need to mention to one of her doctors? I’m just doing some thinking and she has only been to see a GI specialist once and they asked me if she had any feeding problems and I said no but that was when she was about 10 months old and we have not been back to him since then. Any advice you could offer on this would be greatly appreciated.

  2. KevinO says:

    Hi christy,it’s a complicated situation with her eating and I think every child is different. For now, this is the place to communicate. I’ll be getting forums up soon that will give us a better place for this dialog.

    However, Kendall’s reason for not eating is likely due to a number of reasons that start with her being force-fed before she had the tube. The other part is her resistance to learning to chew. Through this whole journey, her eating is absolutely the largest challenge we’ve faced. She does good now with anything that dissolves, but will not eat anything like meat or other non-dissolving foods. Our speech therapist also says that Kendall’s top of her mouth is not developed well enough to push the food and mush it up.

    All in all it’s a huge mystery why she won’t just catch on. She shows that she’s hungry, which is a great step forward. We should get on the phone if you want more details or to brainstorm. Anything I can do to help.

  3. Mihaela says:

    Kendall and Denise look so alike!! Even their eye color appears to be the same! Beautiful little ladies they are.

  4. KevinO says:

    Mihaela- yes they do. We noticed that when we met Denise for the first time. In fact, we’ve found a few other older girls that, in my mind, look exactly like what Kendall would like like in 5 years. The similarities are striking.

  5. shirley bidnick says:

    I am new to this site and am overwhelmed with gratitude to you, for it. I stayed up until 4am reading your Kendall story. It’s the best story I have ever read. Your love for your child amazes me. Rochelle is valuable to me, but I have never met someone else who has allowed themselves to be consumed by love for a child most people devalue, and is able to put it in words. This is a treasure to me.
    So far the story has been focused on feeding and weight. I understand this. Rochelle weighed 10 lbs at age 2, and a feeding tube was never presented as and option. You talk about a sensitive gag reflex and. Say it caused the vomiting. Rochelle suffered from non stop vomiting and diarrhea, and refusal to eat. I thought this was due to immune deficiency. She always had a respiratory or GI infection and was on antibiotics. When the antibiotics were finished, she’d get a new infection. Finally at age 10 she got her tonsils out. The EENT specialist said he “sewed up the back of her throat” and things should get better now. I didn’t ask questions. That was 1990. Rochelle’s condition was still a mystery and I was grateful for anyone who would help us.
    Well! Things did get better. Rochelle gained weight and began to enjoy eating. Today at age 32 she is plump and I focus more on not over feeding her.
    There are so many factors that could contribute to the eating problems but as I read I do wonder about soft palate abnormalities, that obviously got sewn up for Rochelle.

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