What a crazy few months it has been. Kendall continues to be this amazing child that brings us so much joy. She has progressed with her motor skills and is developing strength in her legs, arms and core. She recently found her hands and watches them for hours on end wondering how she makes those little fingers move. It is very cool.

The down side to the last few months has been her lack of growth. She isn’t growing nearly at the rate she is supposed to. At 6 months, she weighed in at 9 lbs, 2 oz. And just last week, 6 weeks later, tipped the scales at a whopping 9 lbs, 12 oz. Only a 10 oz gain in 6 weeks. We were surprised at such a small weight gain because we have been force-feeding her every day, including solids and larger portions. It was so disheartening to see such little progress. We decided that we needed to do something drastic to get to the bottom of this puzzle.

Currently I am writing this from a hospital room at Lutheran General. It all started about 2 weeks ago when Kendall got an upper GI, which came back normal. Cathy then arranged for early intervention, which means that a bunch of people come out to assess Kendall and determine whether she qualifies for help in certain therapeutic areas. The meeting took place 1 week ago today with 7 people coming to the house for about 2 hours. They all agreed (within their respective specialty) that she would need therapy of many kinds to help her catch up to other kids her age. We haven’t ruled out some of the more severe issues that she may end up being diagnosed with, but we are certain that most of these potential issues are not part of her problem. It is all stemming from her lack of food intake.

The day after early intervention gave their assessment, Kendall decided that she didn’t want to eat and only took in a few ounces over most of the day. Cathy brought her in to the pediatrician and the pediatrician said that we should start performing some tests to start ruling out certain things. From the doctors office, we took her to the hospital and she got a CT Scan of her brain. That came back normal. Cathy then pulled as many strings as possible to get Kendall in to see a neurologist and a GI specialist. Both of those visits happened this past Tuesday. The GI doc said that we need to get a feeding tube put into her and put the order in for this surgery.

So, we brought her to the hospital today believing that she will get an endoscopy and a feeding tube inserted. When we got here, only the endoscopy was scheduled. Our hearts sank and disappointment set in. It’s been such a stressful thing trying to get her to eat; even more stressful force feeding a crying baby.

So, I am here at the hospital staying over night with her as they let her recover from the endoscopy, which came out normal. We are told that she will get a tube inserted that will go straight to her stomach from a location right by her belly button. Good chances that she will have this in for over a year, or until she starts eating at the level she is supposed to. This will happen next week hopefully. In the meanwhile, we will continue to feed her what she wants and try to be patient.

Hopefully, the next posting will bring bear great news on her progress and fattening up…



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One Response to Update

  1. Zanesfolks says:

    I am reliving Zane’s early years reading this blog, Kevin. I remember taking over an hour to try to get a jar of food in Zane. Feeling so terrible after I found out I was actually hurting him (because he was having reflux and aspirating when I thought he was just kind of coughing between bites ) I also am dreading reading the next entry ,the way you would when you are watching a movie and you know something terrible is going to happen. I know you will probably get a diagnosis. What a whack in the head that is, huh. Gosh…. I just… ache for you and Cathy here, cause I know the shock and pain and bewilderment that you are about to endure. The unexpected trip to “Holland” you are about to take. I’ll read on now…

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