|Jaxson waiting for his ENT appointment @ Nemours|
Today was our follow-up visit with his ENT Doctor at Nemours Children Hospital. Jaxson had tubes put in his ears and had both his lip and tongue tie clipped back in December 2017. Today was just a follow-up on how they were healing and if his tubes decided to stay put. It was a fairly quick visit, we discussed his most recent diagnosis of DYRK1A Syndrome and what it means for us, his ears, lip, and tongue all looked great as well. We also discussed his Laryngomalacia but she felt confident that she didn’t need to check it, he’s been breathing easy and stridor free, AND thriving! We were probably in that office for a total of 15 minutes!
Panera for Lunch
We had a couple hours to kill prior to our speech therapy appointment, and this momma wanted some Panera! I’ve never had their salad before and had an inkling for it today–I went with the Southwest Chili Lime Chicken salad with a side of Baja macaroni and cheese. I was not disappointed! As always Jaxson nibbled on whatever mommy was eating: an avocado, cheese, and some of my baguette. His brother JJ ordered a ‘turkey sandwich’ but only ate the turkey slices and yogurt.
Walking around the mall with time to kill is quite dangerous. I ended up wandering into Carters (YIKES) but only came out spending $6.97 on a double pack of pajamas for JJ. This kid loves his pajamas but he’s known at home as “captain underpants,” lol. He’s quite the character. I also ventured into Old Navy and found myself paying $6.95 on a sports bra–again, amazed that’s all I spent.
Speech therapy went well today for Jaxson. Our speech therapist mentioned that if she brought his hands together for “more” he did it in his own way. He hasn’t tried doing it himself but I think he’s starting to understand the signs when I do it. We’ve been working on teaching him: “more,” “all done,” “eat,” “momma,” “dadda,” and “help.” One of the common features of our DYRK1A children is that a lot of them are nonverbal for quite some time. I hope that Jaxson will start signing back to help communicate what he wants or needs. It’s hard to figure out what he wants sometimes and I feel bad if it was something as simple as wanting a bottle.