So after all my whining and complaining about N’s feeding therapy we ended up with a great therapist.
At the beginning of the year I was frustrated. We’d been through three since he was born. It felt like the stakes were high for us to find someone who could provide continuity of care (because like I said we’ve been through three and he’s only nine months old), someone who had enough skill and experience to work with him, and someone who had a good overall connection with him and me.
Ever since the new year I’ve been praying for that one person to jump out at me. Someone so clearly chosen by God to be N’s therapist. Well it didn’t work out that way. It basically came down to me submitting to the person at Dell who’s in charge of all the therapists and trusting that God knew who the best person was even though I didn’t. I didn’t like that process very much. I felt out of control, misunderstood, and like so much was riding on that decision.
God did graciously provide some reassurance before we started with the new therapist when Katie said, “Anne is a really good therapist and a really good person.”
N’s been to see Anne for over a month now. I really like what she is doing with him and how she’s educating me. Right now we’re working on pre-feeding skills such as: head and jaw support, intentional use of his tongue when he puts things in his mouth, and of course not choking. That’s a big one.
Here’s what I’ve learned so far:
He knows when he’s about to aspirate because he pulls back on whatever is in his mouth right before it happens. He has learned how to protect his airway which is why he has frequent apnea episodes.
He only can suck three times and then pulls out the pacifier for a break. (She pretty much confirmed with the other therapists have said in terms of him never being able to take a bottle.)
He does swallow. It’s just that it is a very slow and overwhelming thing for him to do. He needs to not have too much going on in order to maintain coordination. I’ve noticed this recently when he refluxes, he holds the milk in his mouth, holds his breath, once he’s settled himself down, he swallows and then gasps for air. The whole process can take 5 or 6 seconds.
He swallows fairly well when he’s not thinking too hard about it, or when not too much is going on in his mouth. For example, if he doesn’t have a cold he can manage his secretions fairly well. Surprisingly he doesn’t drool all that much even for a baby.
So we’re only a couple months in and he’s making good strides with using his tongue to explore objects. See here in this picture how he’s making a bowl with his tongue, sticking it out more, and wrapping it around the toy? That ring is super cold by the way which is helping create that response. I keep a stock supply of those in my freezer now.
Eating is our biggest challenge. It is so closely tied with nurturing that it’s hard to not feel like an awful mother when your kid can’t eat. I know it’s not my fault it’s just that I wish I could make it all better for him, and me, and give him a bunch of pureed carrots and pears. I honestly would welcome the mess. And I look forward to it one day.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!