First, I want to say how much I appreciate everyone's prayers and concerns for Cohen (and for all three kids, for that matter) as we approached his and Emberlynn's recent clinic visit, which was last Thursday. Matt requested the day off when I made the appointment so that if the decision on the feeding tube surgery needed to be made, he would already be there with me. My sister Shauna graciously watched Kyden for us (a big thanks to her!) since he is now walking and would have had to be cooped up in a small exam room for two and a half hours, not to mention it gave Matt and me a chance to be able to focus just on Emberlynn and Cohen and talk to the nurses and doctors with minimal interruption.
In short, the biggest issue for Emberlynn and Cohen is and always has been their weights, or more specifically, their BMIs. They are supposed to be at or above the 50th percentile for BMI; poor weight gain and maitenance can be detrimental to their health because it affects lung function. For Emberlynn, the feeding tube helps tremendously by giving her extra calories via overnight feeds. We are not strangers to this, given that Emberlynn has had her g-tube for nearly five years now.
Cohen, as he has grown taller and gotten more active, has had trouble maintaining an "acceptable" BMI. He is not unhealthy or undernourished, and I have seen far skinnier kids, but those kids don't have CF, so it's not so much a concern for them. We have spent the last couple of months trying our best to "fluff" Cohen up (a term my friend Emily uses, which I kinda love) with extra calories in his meals and snacks plus supplementing with Pediasure and Boost Kids. I have weighed him every week, sometimes several times a week, especially during the last couple of weeks leading up to this last visit. He had put on two pounds, which was our goal, and then a week before the appointment, he got a virus (which Emberlynn and Kyden also picked up shortly thereafter). Go figure that the virus lasted a week and completely wiped out his appetite. He barely ate or drank, which caused him to drop over a pound. Once weighed at the clinic, it showed he had gained about a pound since his previous visit, which was not stellar but a step in the right direction, at least. It bumped him from the 33rd to the 41st percentile, which isn't too shabby, in my opinion. If he hadn't gotten sick, he would have been back above the 50th percentile. (The doctor actually asked me if Cohen could be faking sick since Emberlynn was also sick, but I told him Cohen was the one who was sick first, and no, he wasn't faking it. And as his parents, I think we would know. Sheesh.) Most importantly, we were able to "shelve" the feeding tube conversation for now.
As for Emberlynn, she lost a little bit of weight, but she also had the same virus as Cohen, causing her to have no appetite whatsoever (her appetite is not that great to begin with). We couldn't even use the feeding tube to help make up for everything because it was making her throw up. So now that she is over the funk, we are playing "catch-up" by putting her on her feeding tube six nights a week as opposed to five nights (per her dietician's instructions), which is what we have been doing for some time now.
Emberlynn and Cohen will have another clinic visit in two months instead of the normal three months to make sure their weight gain is good. As long as we can avoid another hiccup (like a week-long virus), I am optimistic they will receive good reports.
And now we come to Ky-Ky, who is growing up way too fast (you'd think I'd be used to that, right?). Yesterday, as I was browsing the dollar store, I found monkey-themed birthday party stuff, so I bought it for him seeing as his birthday is one month away. One month away! I mean, seriously, wasn't he just in my belly? Now he is walking(and running) and talking (he says "Dad", "Daddy", and "Hi") and eating whole bananas (since he refuses to eat it if I cut it into small pieces), among other "big boy" things. (But I sure would love if he learned this "big boy" thing called sleeping through the night. That would be awesome.) He is also still nursing, which is fine for now, but once he turns a year old, I'm afraid he won't be too keen on stopping. He loves the boobies, what can I say? But I suppose we will cross that bridge when we come to it, as they say.
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