Well, Kendall is coming along well in a few departments. The feeding tube has given us a great opportunity to feed her at all times and to make sure she is getting enough nutrition. The result over the past few months has been beyond our expectation. Our goal was to get her to at least 16 lbs by her 1 year birthday. As of the other day (not quite 11 months), she is near 17 lbs. Most of this weight gain is attributed to the overnight feedings she gets. 1/3 of her formula intake is overnight while she sleeps.
We still have issues with her taking solids. With no teeth yet, she is still eating rice cereal, but doesn’t really like to eat it. She starting to chew but prefers to do nothing versus actually taking food. We’ve been working on eating skills by trying to keep something in her mouth at all times, but since her gag reflex is so strong, she ends up throwing up about 2-3 times/day still. It’s very frustrating…
She’s really pudgy and we’re almost thinking that she is gaining too much weight. She’s starting to get rolls and has a triple chin going. She looks great and is starting to approach the bottom of the growth curve. We’re hoping that her weight gain is in line with her height and we’ll find out more at her 1 year check up.
Her progress on the development front is another story. She has therapy 3 times/week to address her speech, development and physical advancement. She is still way behind and can’t sit or roll on her own. She is starting to babble new sounds and just recently started razzing, which is a big breakthrough for her. We’re also working on her hand-eye coordination. She is starting to grab and hit objects in front of her but is not doing it very consciously. Overall, she’s doing OK, but it will be a long road.
All in all, we’re happy with the direction she’s taking and it is a day by day thing for her. With her weight gain up, we’re able to do more as a family. Her tight schedule for feeding was limiting our ability to do stuff with her outside of the house. Even though the feeding pump is mobile, we had to make sure that her food intake was maximized, meaning that we always had to be around the house and had to keep her steady after her feeds so that she kept her food down.
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She is just beautiful!
Keep up the good work Kendall! (and mommy and daddy)
Thanks for the update!
Sue
I have read all about Kendall from birth to one year. It is an amazing story about a father’s love for his child. The photographs are delightful,all of them, but especially the one where she is studying her hands intently. It was nice to get a glimpse of Carson. Kendall has features that are characteristic of WHS, but she also looks like her brother. I appreciate your story about the struggle to feed Kendall.