I have had questions about Liam's nutrition for quite a while but I have never gotten any response that has been adequate enough for me to feel at ease with what he eats.
He just isn't a superstar with it. Well, actually he is, but that isn't what I mean. Theoretically, Liam should have problems eating solids because of his level of CP, his vision impairment and his gag reflex.
But, Liam is shockingly decent at eating second foods from a spoon (clearly no one gave him the memo). He doesn't mind trying new flavors and he does pretty good with mild textures. And he is very open to trying new things. The first time he drank from a sippy cup he shocked everyone. It was recently brought up that they would like him (within the next year) to put a biter biscuit in his mouth. So, I thought why not try it now! I stuck a biter biscuit in his mouth for the first time yesterday and he sucked on it for 20 minutes!
But his superstar status is dimmed by a few extenuating factors. Liam has a decent gag reflex. It isn't horrible but it is pretty strong in that when he moves his tongue just right (or wrong) it will cause him to gag. He also seems to have a tiny tummy limiting the volume we can
And if those GI issues aren't enough, he has reflux. UGH.
And I can relate to the reflux. I have horrible reflux. I have been on and off numerous PPI's for over 5 years and nothing seems to help me. So, I know how Liam feels when his tummy is full... he refluxes more which can cause him to gag and then he throws up.
Because of all of these separate, but united, issues working against Liam, I have had concerns about his nutrition.
Liam will only take around 3 1/2 ounces of formula at a time. Any more than that and he is so uncomfortable that he will reflux and vomit. He does eat three meals a day. All in all though, he only takes in 18 ounces of food a day (IF he doesn't vomit).
Due to the small volume of food, I have had to add things like Duocal, safflower oil, butter and sugar to his foods to beef up the calories. Which, for the most part, seems to be working. Liam is still gaining weight (although very s l o w l y) and there is no mention of a g-tube because he does eat.
My concerns are whether he is getting the proper nutrition for his age.
We were finally able to see a dietician (on loan from Duke and trained in overweight children's issues) this past week. I came in armed with all of my questions and left with none of them answered. UGH.
In defense of this lovely lady, she said she would seek out the answers and get back with me. I mean, really, what did I expect from someone who has no clue about micro's and undernourished kids? She is trained in the opposite problems. So, for now, I continue to trudge on in the hopes that Liam is getting what he needs.
I worry about that too; so I am interested in what information you get back. Randy has fallen out of love with his bottle and only drinks 7-12 oz per day. He eats three meals, but sticks to stage 2 foods and a couple of stage 3 meals if they are not chunky. My fear is that he is not getting enough protein because he cannot tolerate the texture of meat. Please let me know what she says when she gets back with you.
Good luck on your journey to find the answers--Clayton is tube fed, but we still worry about him getting proper nutrition . . .
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