Zadie had another follow up with her surgeon, the Italian Stallion, today. He's Italian, of course, and kind of dashing and he wears red clogs regularly. Anyway, I didn't expect much of the visit except for him to look at her palate and say it looked good. I know that it's holding steady up there because Zadie was sucking yogurt off my finger yesterday and has really good suction! She also drinks really well from her sippy cup.
So, I was surprised that the director of the craniofacial team came into the exam room also. He began asking me questions about Zadie's progress with eating. I told him how she's doing, and then he asked who is following her about her trach and what they think about her getting it out. I thought that was odd, because he's from the craniofacial team who is supposed to be following her and guiding us along. We don't really have anyone following her specifically for the trach and should we? I don't know. We have the ENT, but we've only met him once, and at the time, he said that Zadie will probably have her trach until she's closer to 2, so we won't be looking to decannulate (remove the trach) much sooner than that.
I then mentioned that I was going to be calling the ENT soon to make an appointment to talk about possible downsizing the trach and working on the speaking valve. Zadie's almost 14 months old and because of this stupid trach, she doesn't make any noise. She should be talking and saying words by now, and she doesn't make a peep. So with that, the doctor says, "Yeah, you should be talking to him about that, because we're behind already, she should be making noise and speaking by now." Well, thanks, pal. I wasn't upset enough about the fact, now you made me feel worse and now I feel like I'm holding her back because I haven't been pursuing things enough. Blah.
So, hopefully we'll have an appointment with a pulmonologist next week who we can talk to about the status of the trach. I'll get an appointment with the ENT and one of the speech pathologists to talk about downsizing and working with the speaking valve. Then we'll have another meeting with the craniofacial team about the plan going forward. I really hope that we someday get to the point where we feel like someone is driving the bus and directing Zadie's care! I had this anxiety months ago, but I thought it was resolved. Apparently, I was wrong.
I also have to find an eye doctor in our plan to make sure Zadie's eyesight is ok. There is a genetic syndrome often associated with Pierre Robin called Stickler's and while Zadie doesn't appear to have it, she still needs to see an eye doctor. Kids with Stickler's often have eye problems. She also needs to get an appointment with a dentist. Lots of appointments in the next few weeks!