I am willing to bet I have written more about Kiran’s feeding issues than his cardiac issues. I have said a million times (and will a million times more) that the feeding issues are the hardest. Cardiac is scary, yes, but cardiac isn’t something I am supposed to be able to do, and it isn’t something I have to work on multiple times a day, every day.
Kiran’s oral eating ebbs and flows. Sometimes he will have a really good meal – or a really good day – (and by good, let’s be clear, a good meal for him is 15-20 bites) and sometimes he just decides to be very close-lipped for meals or days. We have been in one of those periods recently. And I had been frustrated.
I ebb and flow too, with how I feel around mealtimes. I have been able to refocus myself this week with working on the sensory stuff with food with Kiran. If he isn’t going to eat, we can at least smoosh pudding around (and what better hair gel exists, really!?!) and throw puffs on the floor. We can watch the thickened water drip from the spoon to the tray. We can use the grabber to taste a new spice.
It’s been good for both of us, it seems. We are still working toward our ultimate goal (baby steps, teeny tiny baby steps), and I am not pulling my hair out trying to get him to take bites. Tuesday at dinner seemed to be a breakthrough. We started with the pudding that night, and suddenly, he wanted to eat again. He took several bites of pudding, several bites of his stage 3 baby food (I think it was chicken noodle or something), a few bites of pear, AND did two drinks off a spoon of his thickened water! I have been offering him his nectar water 2-3x a day since Sunday night, and this was only the second time ever he accepted it – and the first time he did more than one drink.
It encouraged me. Like I said, I ebb and flow. I am not always good at letting him explore and make a mess every time we sit down to eat. But it excited me, and we have been doing a LOT more sensory play during mealtimes this week. I have slowed my brain down and really enjoyed the time with him (as best I can; I think I have sensory issues too…I don’t always like being messy while helping him!)
Today at lunch, Kiran calmly and willingly – eagerly, even – took six drinks of his nectar water off a spoon. I have to gently hold his hands to keep him from “helping”, but once he got the first drink, he was readily opening his mouth for more. The best part? Absolutely NO coughing, gagging, or difficulty of any kind! It is so great to be in this place, with solid direction, and something that is working for him! Due to tiredness, we took a break from oral practice at snack time today, but he did three spoon drinks at dinner as well!
It probably seems like such a small thing to people who have never had a child with feeding difficulties. 9 sips of water in one day – big deal, right? – YES! For a kid who has been pretty much refusing liquids for over a year now – or struggling with them if we weren’t giving him the tiniest of sips – this is a big deal.
I’m so excited about the progress he is making and where he is headed. I am under no illusions and know this will be a slow process, but it is progress. We continue to head in the right direction, and I will continue to work alongside him every step of the way.