March 15, 2010
As most of you know, Cole has received almost all of his nutrition via a feeding tube since he was only a month or so old. We have always been trying to encourage oral feeding, but without much success. We have been working with a feeding specialist for about a year and a half now. Cole's main issue with eating is swallowing slowly. He doesn't aspirate (breath food/liquid into his lungs) which is great. He also doesn't have oral aversions which is also good. We had hoped that as Cole got stronger in his torso and neck, his swallow would come along, but it really hasn't. Cole tends to do two things that conflict with good swallowing. He lets food pool in the back of his throat, which then triggers his gag reflex (he is very good about protecting his airway). He also tends to hold food in his mouth and only swallow about 5 bites in about 15-20 min. At one of our more recent sessions, the feeding specialist wondered if we would have to stop our sessions for a while because Cole wasn't showing any progress for months and she was doing the same things in session that I was doing at home. So we planned to have one more session and decide.
Cole also has physical therapy at the same place and today we had physical therapy scheduled first and feeding therapy second. Prior to the appointments, Cole had been acting like he would take a nap. His eyelids were heavy and he was kinda fussy. Cole has been very erratic about naps the past several months; sometimes he takes one and sometimes he doesn't. And sometimes, like today, he acts like he is going to take one, and doesn't. After getting very close to sleeping, his eyes just pop open and that's the end of any hint of taking a nap. Sometimes he acts as if he's taken a nap and is in a good mood. Other times, like today, he acts as if he NEEDED to take a nap and is a pill. So, we went to physical therapy, and he wasn't very cooperative and was quite cranky. At the end of physical therapy he was looking pretty tired and I was thinking his feeding therapy appointment was going to be a bust. We started the appt as we always do with some oral stimulation with various items (to get his interest up). The feeding specialist started feeding him some applesauce (a common food we try and feed Cole). And he swallowed it almost as soon as she put it in his mouth. This happens occasionally so it really didn't catch our attention. She gave him another bite and after a moment, he swallowed it. She had to keep propping him up in his high chair cause he was sleepy, but he kept taking bites and swallowing them. After about 5 or 6 bites we were both very much noticing the difference. At one point I sat back and looked and thought, this is how other children his age eat. He kept it up and ate about 4 times as much as he usually does. We were slack jawed. Finally, Cole had had enough and stopped swallowing, but it was sure fun to watch. It also re-energized me for continuing to practice with him. Sometimes its a little hard to keep up the practice when there isn't much reinforcement for doing so. We also decided to have another session with the feeding specialist in a few weeks. One thing I realized is this the same pattern how Cole's new behaviors have emerged in the past. We will see a new behavior once, and then it might be a long time before we see it again, but eventually it starts to happen more and more often. So we are hopeful. I don't really expect him to suddenly start eating like that all the time, but we ARE hopeful that it will happen again sometime and hopefully sometime soon. Anyway, it is fun to celebrate Cole's successes.
Shawn
