One week ago yesterday, Braska had her last tube feeding. I thought we were going to have to change that yesterday, as she really wasn’t in the mood to be drinking. I’ve said before, and it’s not overstated, that to make her mouth, tongue, throat, and all the incorporated muscles of lesser known names work together and allow for her to take fluid in and swallow it properly is a lot of work for her. It does not come naturally. It is not a reflex. She does not “just get it” now, she is working hard to get it. Very hard.
At times, when she’s holding a mouthful of milk, just sitting there, waiting for me to take the sippy cup away, her eyes will go from side to side, her neck twitches and moves, her jaw slides from side to side or clenches a bit. It’s all like a bit of quiet chaos as she tries to organize everything in order to get that swallow done right, without choking, and allow more drink to come in. It’s a very slow process.
Don’t think that she’s just up and guzzling down her fluids. To get about 4 ounces in her takes about 10 to 15 minutes of constant work. She gets a break and then it is time to try again, with either more fluids or something to eat. We have to do food/drink in staggered amounts because she doesn’t hold very much at one time.
Because of that, the non-use of the tube has definitely created more work for me, and for M when he’s in the feeding role. Much more time is devoted to getting her food/drink in orally than when we can rely on the tube. But we are sticking with it, and she hasn’t fought us too hard yet. I think we can get there, even if it is slowly.
We’re already in to this process almost 5 years. Now we’ve got one week toward the next chapter… I’ll take that.