Hello all! Wanted to update on our latest week of therapy. It's no secret I wasn't super excited to go the week before 10 people would be staying at my house for Thanksgiving, but of course I'm glad we went! I have to start by saying how fortunate we are to live so close to this facility. The other 'feeding family' there was from Chicago and had to make the most of their 2 weeks before going home. We actually just had 4 days of therapy and will do that again in March. Otherwise Polly is booked until next July. Well I'm having a baby in June, so there's no way I'm waiting to get this kid eating! We hope to start really weaning him from the tube in March.
So our big issues coming into therapy this time was bite sizes (miniscule) and getting him to chew soft food instead of just letting it dissolve or trying top swallow it wole and gagging. First, after noting his weight is soooo good (for the first time ever), we cut down on his tube feeds almost by half. Then pretty much Polly asked him to open his mouth bigger and he just did. Honestly, I'd given up at home. If he took one open mouthed bite of something, I was pretty darn happy for the whole day. Now, he can finish 4 ounces of yogurt in about 20 min. This has actually changed our lives. There is a big difference between 20 min 6x a day, and 45 min 6x a day. Especially when in those 45 min, you're lucky to get an ounce of anything in him.
Then we started work with getting him to take the food in his mouth and move it to his molars to crunch it. You could really see how incredibly hard it was for him to do, but it continues to get easier every day. I really have to coach him through every step. Sometimes I'm staring at him so hard he starts to laugh. Woops! Lol
Crunchy stuff is much easier for him to chew, or anything that makes a sound. But its all about how you approach him. I think training horses has given me pretty good insight in dealing with this (thanks mom and dad). With horses you have to figure out how to get them to do something in a way they understand and also so they can be rewarded in a way they appreciate it. Pretty similar to kids. I got James to chew fruit snacks by getting him interested in how it was sticky on his teeth. Then I finally (finally) got him to stop swallowing whole pieces of pasta, avocado, banana, etc (slippery things), by asking him to spit it out first. I think he. Wasn't sure how to manipulate those sorts of things in his mouth. Course, its still hit or miss. Today he gagged on banana and puked all over. But he did come back and eat more and chew it a little more carefully. Smart kid.
So everything was very successful and encouraging. We came home to a ridiculously fun and wild Thanksgiving where, yet again, I miss out on all the good wine. Psht. Shoulda planned this better. James is napping better and sort of sleeping better. Since changing out the button he is not in so much discomfort, but he still wakes up several times a night. I figure I'll deal with it more after Christmas. One thing at a time. Or, rather, 180 things at a time, but I'm at 180, so sleep will just have to wait. :)
