Corrigan has been around 98% tube fed for a long time now. He used to eat a small handful of French fries, or strawberries now and then, but over the last year his aversion to food has led him to nearly zero intake by mouth.
Any sort of illness that causes congestion, or after periods of frequent vomiting, it can take months before he will work up the courage to take even a single bite of food. I could write pages and pages about his issues on feeding and the emotional toll it takes on our entire family, but today I will instead focus on the tiny glimmer of hope that a bite of chocolate cake has brought to my heart.
Last week we bought a cake for a friends birthday and Corrigan was extra curious about it when it was served. He will not eat food but he very much enjoys sniffing food, talking about food or playing with pretend food, but not actually putting it in his mouth.
A few weeks ago he started asking for Pops (poptarts) and holding them in his hands and licking them. At Sunday School, I was surprised when he took the granola bar offered at snack time and proceeded to lick it as well. It’s weird, I know, to allow a nearly 5 year old boy lick his food like a tentative puppy but at this point we discourage NOTHING that brings food closer to his mouth.
So when he asked for a bite of birthday cake we offered one quickly and to our surprise he ate one bite…and then two… and then four…until we were cheering as if he were 4 month old and taking his first bite of rice cereal.
In the last week, the leftover cake has become stale and the icing long gone since his request is always “Cake? The white?” ( the icing was white with crushed Oreo) but every few hours, for days, he stops what he is doing and asks for it again and again.
Stale or not, he wanted more and actually, the more stale it got, the happier it made me to see him eat it because it was no longer soft and “safe” it now required chewing and swallowing with more difficulty.
His urea cycle disorder limits him, dietarily, in many ways so he is essentially vegetarian, but he does have an allowance of protein and calories for each day in the hopes that he will take something by mouth (aside from the huge amount of nutrition he gets through his g-tube) and short of meat, I can fit a few bites of nearly anything into his requests. The cake’s first ten ingredients were not dairy (eewwwww, store-bought cake) so I wasn’t super concerned with his frequents requests, instead absolutely elated each time I heard him ask for more.
To my greater surprise, last evening he walked into the den with three bananas in one hand and gnawing on an unpeeled banana with the other. I quickly peeled back the outside and he continued to eat 3/4 of a very large banana.
This from a child who hasn’t allowed food in his mouth since September. A Christmas miracle, indeed.
Daddy was so excited at this new love of cake that while out purchasing groceries for this weekend’s possible snow, he grabbed a giant slab of marble cake with lots of “white” for his little man.
I pulled my food journal notebooks from storage and dusted off my food scale, prepared and SO happy to be able to calculate some actual oral intake again, gave him a few bites to see if he liked vanilla cake, and then put it up high until he asked again.
Obviously not high enough because when I was upstairs looking for snow clothes a little cake thief was busy climbing up on counters to snag his new
That big beautiful slice upside down on the floor, a fistful of stolen cake in his hand. It made Jericho very happy to find.
Oh my, I always wondered if we’d need a lock on the pantry door, and I’m sure this is all too soon to get excited about, but I would LOVE to need to lock the pantry door, because that would mean my baby was an EATER. That would mean that we were making progress again. I’d do anything to have him less reliant on the feeding tube, including cake three times a day.
I never thought this is how I’d ever feed my child, but when dairy, meat, soy, eggs and peanut butter are a danger to him my options are slim. I’ll find a way to sneak apple sauce and carrots into a recipe he will love, there’s ways to sneak in some nutritional value into cake, but I’m not messing with what has him chewing, and more importantly swallowing, at this point.
Let him eat cake!!!!( just under better supervision)