I have a lot to blog about, but I thought I would post something pretty exciting first. A video of Harlie drinking from a straw - for the first time EVER!!!
For those of you that don't know... Harlie never learned to suck and swallow. She has been tube fed from birth and has only been able to swallow for a little over a year. We've been working on trying to teach her how to suck, but it didn't seem to be working. It's so weird to try to teach something that most everyone just does naturally, without ever really having to learn it.
Our feeding therapist gave me a valve that you put in the drink-end of a straw. It allows the liquid to go up the straw, but doesn't let it come back out again. So, if you do suck a little of the liquid up, but don't have enough power to get it all the way up in one suck, you don't have to start all the way over again. But, even with that valve, it wasn't working.
In the past few weeks we've been at cookouts or other gatherings where the kids are drinking from juice boxes/pouches. And Harlie would grab one, and pretend to drink from it. Or try, even. But I think the straw is just too tiny for her to get good closure around it. And she has been watching Cooper drink from a straw. I have a big water pitcher and he likes to drink from it. Well, tonight, she watched him drink from it and then she wanted a turn. So, I gave it to her, not ever expecting her to actually get any. And it's a long straw, too. But, it's a big one, so maybe that helps with her lip closure or something. Anyway, she sucked water up the first try and swallowed it. So, I grabbed a smaller version of the straw, and some milk, and she loved it!
Oh, pay attention to the sound that you hear at the very beginning of the clip. That is a sound that she makes with her throat all the time. It is so weird.
Anyway, I think I'm in shock. She drank a little over an ounce in no time with that straw. And while it looked really messy, SHE DRANK FROM A STRAW!!! And she will only get better at it from here on out!
I just can't believe the progress she is making with eating and drinking!
I haven't been able to blog about our feeding therapy last Thursday. Allison tried a special cup, called a nosey cup. And that has been working great. It has been a struggle to find the right sippy cup that allows flow at the right rate (since we had to take the valve out since she didn't suck).
And, to make things even crazier, she set another record today - eating a total of 22.73 ounces by mouth! And Brandy has been able to get her to eat/drink at school, too. So, she gets to eat lunch with her classmates. And she does it with no motivation (no toys to bribe her for bites). So, she's making huge amounts of progress all around!
Thanks for sharing in my excitement!!! More later!
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