I guess I've been in my head all day thinking through all the possibilities and options. I would love to be optimistic, but I don't expect much to come from this appointment. In my fantasy he would suggest an airway surgery that would fix her airway and the trach would come out this year. I'm expecting more "wait-and-seeing". If nothing else it will be nice that he can scope her and see if the Prevacid changes have done anything to help alleviate the leftover airway swelling. The pharmacy wasn't properly labeling her prescription, so we are now giving it on an empty stomach as it should be. Thanks to my friends on the trach forum for giving me that information. In addition we switched to the Solutabs which have a reputation for being more effective. She is having an easier time forgetting that she's wearing her cap. And she has been eating more. Since you can't see the airway the only way to know for sure what is going on is to stick the camera down her nose and look. We shall see. So stay tuned to see what the results are next week.
On a positive note, as I said, the med changes have caused enough of an improvement that we've seen a dramatic increase in her ability to swallow. I didn't want to say anything until I knew it wasn't a fluke. Now it's been nearly a month of her drinking a fair bit of her blenderized formula from a cup and straw. It's the consistency of a smoothie, but not quite as tasty because it's healthy and contains chicken and veggies in addition to the fruit and yogurt (and other ingredients). She's also become much more interested in table foods. She will put food deep into her mouth, even biting off pieces and spitting them out. She doesn't know how to chew and swallow them yet but she is enjoying the food and that is the main thing. We are probably still light years away from getting her to take all the necessary calories orally to maintain a healthy weight. But it is a massive bit of progress after years of frustration. Here are some images from the past month.
This may be another factor. On 6/9 we taught her to spit food out. Counter intuitive, yes, but actually it gives her a greater sense of control now that she can get food out of her mouth by herself.
On 6/20 she completely wowed us by eating Yoplait peach yogurt which, by the way, has CHUNKS in it. Chunks which she has previously found difficult to swallow without gagging.
She even spooned it all by herself!
Signing for more each time the bowl was empty.
On the 4th of July she impressed our family by biting a hotdog into pieces (still not swallowing obviously). Of course Nathan's are DELICIOUS. That shirt was cute and clean when I put it on her, I swear.
While I'm at it I guess I'll share some more 4th of July pics. We had a great time and it was fun to host since we live in one of the few areas still allowed to have fireworks, being in unincorporated King County.
Evie planting pinwheels.
Ainsley enjoying the lounge chair with Grandma Glenna.
Our pergola decorated for the occasion.
The kids loved taking turns wearing this goofy hat.
I helped Ainsley do a sparkler. She LOVED it! And signed for more.
Then Steve let off the rest in the backyard, mostly fountains.
Yikes. There were a few aeriels in the box but luckily we didn't catch the shake roof on fire. It's not quite like the big shows but still fun.
I feel a little better after blogging. Stay tuned for ENT appointment results next week. And pictures of Ainsley's push style wheelchair which we finally get TOMORROW after months and months of waiting. Hooray!