It seems we’ve entered into a new phase of life in our household; Nik has, apparently, gone from not interested to ravenous as a pack of teenage boys in a matter of days. It feels like my day —which used to revolve solely around shuttling Nik to his various therapy appointments, playing with and teaching Nik things like how to put on his shirt —now revolves constantly around food.
If I’m not preparing the next meal for Nik —a fairly labor intensive process thus far, requiring grinding of foods and mashing and mixing of flavors to appeal to his indiscriminate palate but which will also provide balanced nutrition —then I am shopping, cooking, thinking, planning, researching, and feeding the child. Toss in doing mostly the same for my husband (though he’s quite capable of feeding himself, thank goodness), then you can begin to understand why I feel like a junior restaurateur. Oddly enough, I did a stint as a restaurant manager in my long ago twenties but that’s a story for another day —or not.
Still, I can only post so many images of my child stuffing his face or so many twitter posts about how much Nik eats in a given meal. It gets old after a while. Fortunately, we have not yet reached that point! Soon; I promise. But for now, allow me to revel in the glory that is my son’s ever-increasing appetite and advancing oral motor skills.
It’s only been a week since Nik started eating again. Sure, he’s been enthusiastically licking and slurping tastes from a spoon and sipping from his sippy cup for a while, but we’ve graduated to the level of actual consumption. Nik is now averaging roughly twenty to twenty-five percent of his daily nutrition by mouth! Today alone, he consumed nearly seven ounces of food by mouth at lunch.
Not only have we achieved a consumption of notable quantities, we’ve begun the next phase which is acceptance of the spoon when presented in a “typical” fashion. Yes, we still have to turn the utensil so Nik can take the occasional lick but he is cooperating more and more with accepting the spoon and with actually closing his lips around the spoon to clear it.
Some of you may wonder why that is such a big deal or why it’s taken so long to reach this milestone. If you haven’t experienced it, it’s difficult to explain in an adequate fashion but I’ll try:
Imagine if you spent a very large portion of your earliest days of life in this get-up.
No opportunities to learn to suck or swallow, no way to actually close your mouth completely —to even feel your lips touching together— and no way to move your tongue in any manner save for rubbing the very back of it on the tube stuck in your tiny throat.
Then, once you’ve graduated from all that awful stuff on your face and in your mouth, and you’re just learning to use your mouth for good stuff —like eating, someone starts to give you daily medications that make you feel funny and not very hungry. This lasts for two years.
Nik was just beginning to learn new oral motor skills when he was put on the seizure medications which —while they did prevent seizure activity, a highly important thing for his overall health and well-being— dulled his senses to the point that he lost all interest in food and all ability to recall the slight bit of oral-motor muscle memory he was beginning to develop.
In the sixty-two days Nik has been free of those medications, Nik has made such phenomenal progress —much of which I’ve talked about in other places —and he continues to push himself. It’s as if he is consciously trying to catch up on things he’s missed out on.
So, please pardon me for boasting and boring you with the minutiae of Nik’s daily eating habits. It’s been such a hard-fought battle —one I can’t even say is won yet. Someone asked me recently if this means Nik will lose the feeding tube soon; I honestly cannot say. I do know that he needs to make significantly more progress —including learning to actually bite, chew and swallow all of his food —before that discussion is even on the table.
In the meantime, I’m trying really hard to use each meal as a learning opportunity.
When Nik was in the NICU, I was unable to express enough milk to feed him. My doctor told me not to worry about it; he said lots of woman whose children are born so prematurely have this difficulty. What he couldn’t tell me though, was how to deal with the grief I felt over not being able to bond with my child in this most primal way; the knowledge that I would never feel my precious baby suckling while cradled in my arms. It was a bitter pill to swallow then and one on which I still choke in moments of sleep-deprived frustration. It can be mentally and emotionally exhausting for me —this struggle to let go of the guilt I feel around my inability to provide the one thing for my child that seems to be a natural and inherent part of motherhood —nurturing and nourishing one’s child with food.
Whenever Nik fights me about eating, my knee-jerk reaction is to take it personally or to get angry and I wonder what I am doing wrong or why it’s so damned hard. I have to stop and remind myself of, well, so much. That it is Nik’s process and that he is actually the teacher. That he has made such rapid and tremendous progress in spite of the constant barrage of sensory input he has to process with each and every bite. If I change a food, does he know what flavor to expect on his tongue? Is the consistency too thick or too lumpy? Is there too much fiber in his meal which will cause him distress later in the day or night? Does he do better when he’s holding his own spoon and trying to feed himself while alternating bites from my spoon? How much effort does that coordination take him; how hard is he concentrating and how tenuous is his concentration at any given meal?
It is such a deeply intricate dance of give and take, watch and follow. That seems to be our norm in nearly everything these days and it takes a lot out of me. And yet, given the choice? I would feast upon this challenge like a glutton. The progress is too sweet to pass up.
Wow and look at him biting into that apple?! I am so very proud of Nik, and of you, and yes, it is hard to think of the bonding that didn’t happen but look at all the bonding that IS happening now.
I LOVE his facial expression in that picture! He’s like, “Yeah, I’m eatin’ this apple. So what? NOM.” Please, continue to barrage us with details of how he is progressing and how much he ate. 🙂 I find it all very interesting, not to mention educational! I am sure that someday I will have a child with eating issues on my caseload. 🙂
Food glorious food!
All photos of Nick doing all things are always lovely to behold.
Happy eating!
I like hearing your stories. I think we all cheer for each other when our kids hit new milestones.
And think of someone just beginning what you have already been through. I would think it would be so helpful!
I guess what we learn is not to take our kids for granted. I wouldn’t trade my life for anyones!
Relish these days, girl. We’ll be here to enjoy them right along with you!
Saying we will be tired (or you will be tired) of pics and stories of Nik eating- or his many other victories- is like saying someday I will tire of hearing Joey speak. It ain’t gonna happen. Bring it on, we want those pics and narratives!!!
Oh, what a beautiful post. I can just feel your pride in those words you have written. And what an awfully good lesson for all of us with special children — it is THEIR progress, THEIR journey, we are the supporting players. It is a good thing to keep in mind when we get frustrated. Because we all do get frustrated.
Thanks for a wonderful post. Just what I needed to read tonight.
Thanks so much for telling us the backstory on Nik’s eating – it makes us understand so much more, and we can feel the pride coming through on your post. GOOD FOR NIK – and we look forward to hearing about his percentage increasing…. XO R
yes that day of being tired of the food talk may come, but the joy of watching him never will. Moosie started out in a much different way than NIK (nearly 10 lbs!) but no suck/swallow and still issues with apraxia. eating is such a labor intensive progress, Moose eats all of his nutrients, but he is a constant snacker not without lots of stuffing/choking/gagging/vomiting. I hear that once we get the chewing movement nailed down, maybe we can move on to teaching him how to clear a spoon (he kind of shovel-dumps now). Anyhow, same as with the communication, you will have these secret smiles and bursts of silent pride as he becomes more accomplished in these areas…. I have no doubt that Moosie’s birthday will stir many emotions in December, but nothing will be as sweet as watching him happy dancing to the candles and taking a much-wanted bite of his cake.
I won’t get tired of Nik food stories. Promise. 🙂
Wow, he is doing great!!!
Wow! I am soooo happy to hear that Nik keeps on eating! He must be going through a growth spurt too. He is getting bigger! All your hard work and patience shows.
I love hearing about Nik’s amazing progress!
It doesn’t get old, even on Twitter! I love reading about Nik’s eating, it is glorious what progress he’s made (and you too, mama).