We got home from vacation in July and started hitting feeding therapy hard. We increased the frequency of Nathan’s sessions to twice a week and started vital stim, which is a combination of electrical stimulation to his neck muscles along with swallowing exercises. Since being tucked away in the tiny speech therapy rooms of the rehab center, and working super hard week after week for a one-year-old, he’s had his good days and his bad days.
But then last Wednesday he had an exceptional day. It was so exceptional that I got to feed him a bit, which I’ve never been allowed to do in a therapy appointment before.
It’s actually Jessica, his speech therapist, feeding him in this video, but you’ll notice the technique she’s teaching me is to allow him to come to the spoon, and not for me to bring the spoon all the way into his mouth. You can see how he goes for it. He’s so vocal and expressive. I love watching him request more in his own, very Nathan way.
It’s been fun to see his preferences for flavors and textures over the past couple of months. He hasn’t been introduced to much however, together we are starting to learn more specific things about Nathan and feeding. We do feel confident that he doesn’t like water or lemon water that well. The runny liquids just go down too quickly and he can’t manage them in a coordinated manner. He consistently enjoys apple juice (with a thickener added) and squash (made thinner). It must be a combination between the sweetness and the consistency. The consistency is key and has to be just right. (I’m telling you this kid is Goldilocks.) In order to get a thicker liquid you add a gelatinous substance that reminds me somewhat of runny jello. I can’t help but think of how my super health conscious sister would not approve of the chemicals of the thickener. I have to say that I thought it was equally horrible to taste, even though Nathan went hog-wild over it. Oh well, it’s working.
Feeding him was a sacred moment. As I was lifting the spoon to his mouth so that he could take off a little bit of squash, it was as if time slowed down, Mac’s iPad game in the background tuned out, and God whispered, “Enjoy this.” It’s in those small, simple things – the things that we tend to take for granted – where something beautiful can be found. It was like realizing this tiny seed, that we planted shortly after he was born in the form of feeding therapy, and have been faithfully watering with all these treks down to the hospital, and many different therapists, is starting to sprout forth. I say that, and at the same time, I realize that next week he could completely lose all coordination, choke and gasp through the whole appointment, and have go home early because it’s entirely too stressful for all of us, including the therapist. And yes that has happened before.
So before y’all go getting super excited like I did, don’t think that I’m feeding him at home, because he hasn’t been officially cleared for oral feeds. He’s eligible for a modified barium swallow study once he’s completed 20 sessions of vital stim therapy. He’s almost halfway there, so sometime in the next couple of months we’ll go in and repeat the test that he last had over a year ago. It will reveal if he’s aspirating, when he’s aspirating, and how he’s responding to different types of thickners. Ultimately, it will show how much of all this work has paid off. His feeding therapist said that some kids will use their g-tube for liquids and eat solids for taste, not volume. This is likely the next step for him, assuming he passes this upcoming swallow study.
So this study that I’ve been pushing, nagging, pleading for well over six months now is on the horizon. Perhaps we are getting closer to seeing more growth of that little seed called therapy. As much as I would like to see fruit blossom, maybe the even more beautiful thing is happening in my heart. It’s more surrendered to what is, and not fighting what is not.
He did it again today folks!
Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.” -Proverbs 3:5-6
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