Well Tuesday actually went really well! First stop was to get her hearing aids, and although she didn’t like them messing with her ears, once they were in she calmed down. When they were turned on, she got very wide eyed and whipped her head around to look at people as they spoke. She became very focused on examining the world around her. She can hear without them, but I imagine this introduced a new, deeper element into her world! It was fun to watch her reactions! She did really well with leaving them in, too, which I was shocked about! She only pulled at them twice, but that seemed to be more curiosity than anything. She actually wore them most of the rest of the day. The last few days she’s been wearing them frequently and seems to be enjoying her noisy toys even more!
Next we headed to radiology for Evie’s swallow study with the speech pathologist. We were able to get her to swallow and she was able to protect her airway and not allow any food into her lungs. So great news. We chatted with the speech pathologist afterwards though and she felt like now was not the time to push feeding. She firmly believes this is anatomy thing (trach, choanal atresia) rather than her just needing to learn. In her words, “Evie is doing so many other things developmentally that if she’s NOT doing something, she probably has a very good reason.” That was very encouraging. We certainly don’t want to push Evie if she’s not ready or able, but I’m glad we discussed it with her to confirm that we weren’t missing an opportunity to be proactive.
She also tried covering Evie’s trach as she exhaled, but Evie wasn’t able to get ANY air past her trach and up out her mouth. This means either the trach itself takes up too much of her airway so air can’t get around or the scarring in her trachea is so extensive that it has completely blocked her airway above the trach site. This is what we suspected so it puts the kibosh on the speaking valve for now.
I know that sounds like a lot of bad news for the day, but we really don’t feel that way. We’re glad to know where she’s at so we can plan therapies accordingly. We’ll focus on sign language and when a speaking valve becomes an option or the trach is removed, her language development will already be present and we can work on actual speaking. And as for the eating, we’ve said before that we really are in no hurry. She’ll do it when she does it. In the grand scheme of things, it’s just not something for us or her to stress about!