Monday, January 17, 2011

"Hopsital" Day.

Today was a "hopsital" day (as 3 year old Taevy would have said). Kendi's quarterly HIV appointment was today. Everything appears to still be great with the HIV. We'll know for sure when the labs come back.

It does appear that we're headed down an undesirable road with nutrition. Haven't posted about it much because after Samren's issues (failure to thrive, rare GI disease, g-tube, formula-based diet, destroyed immune system, etc.), it would take a LOT for me to get to the point of really worrying about Kendi's lack of appetite. I keep notes. We do the best we can. But she's not slowly starving to death like her brother was. Still, she's not eating enough to grow.

The day she came home from Ghana she weighed 21 pounds. Now, she hovers somewhere around 22-25 pounds (depending on the scale and the day). But she's 6 inches taller! If she was eating well I wouldn't really be concerned at all. But for the last month she has decided (again) that food is not her friend. Ugh.

She's not a picky eater. She likes a variety of foods. She will eat any texture. But she simply refuses to eat. Her one staple right now is whole milk with Carnation Instant Breakfast. I can get that down her pretty much every morning. The rest of the day she may eat a few olives off of my salad, or a few bites of bread here and there. She's generally eating 500 or less calories a day. NOT. ENOUGH.

So--lucky us--we get to go see the nutritionist, who will probably send us on to a speech therapist. We will get to the speech therapist because they won't believe me when I tell them she does not have an oral aversion to food. I think it's something medical (like the formerly diagnosed delayed gastric emptying). They will have to see for themselves that it's not psychological and we will waste a lot of time and money proving it to them. [Or, I'll eat crow if I turn out to be wrong!]

Our experience with children who don't eat is that it's always first assumed to be some sort of oral aversion or sensory issue with the child. I really do not wish to go down this road with another child. I don't have the patience for it--for all of the doctors acting like I'm an uninformed mom. [No offense to my doctor friends!] It's weird to me that we're not going to see a GI rather than a nutritionist/speech therapist.

Other than the food, Kendi appears to be doing fantastic.

Tomorrow is Taevy's big day at the hospital--the cardiac appointment we've been waiting for. Please pray with me that everything is absolutely NORMAL!


Renee 9:04 PM