We had a calm, restful summer and we are back into the school routine. Beckett is in ECSE again, with his same teachers who we absolutely adore. This summer I tried to take a step back from appointments as much as I could, because I really didn't want to spend all summer at the doctor with the kids.
Back in the spring, he had a follow up at the Complex Care clinic, and we talked about how he had yet to get into the clinic we were on the waitlist for, so they suggested we try therapy (feeding and speech) through them (UTMB). I am the type of person who is able to tell very quickly the way I feel about someone. When the OT for feeding came in to observe him, I felt the energy shift. She watched him eat a graham cracker, and a fruit bar, and proceeded to tell me I was holding him back by giving him a bottle and I needed to take it away. I was immediately closed off and although I shouldn't have felt pressured to start therapy with her, I also felt uncomfortable in that room. Contrary to what she believed, I did not want to hold him back, so we scheduled upcoming sessions for feeding, and speech. First up was a speech appointment, and I was so relieved meeting his speech therapist. She was incredibly sweet, and made me feel sane right at the beginning, so I thought maybe I needed to relax and give the feeding therapist a chance seeing as they were both at the same clinic. Then came time for us to go to feeding again, with the woman my gut was telling me no to. At the appointment, she asked how it was going taking the bottle away, and I told her simply we did not take the bottle away. She questioned me again, and I said it wasn't fair for us to take the bottle away as that's literally the only nutrition he receives. While she agreed with that, she said we needed a set schedule for when he was allowed to drink, but honestly whatever Beckett wants, Beckett can have. We continued through this visit, and went on our way. Thankfully (or maybe not so) the kids got strep and I had to cancel the next two appointments. I was dreading having to go back and see her, but just like that I got a call from the clinic we had been on the waitlist for since we moved here last year, and they had an opening for Beckett. I did not hesitate to reach out to UTMB and say thank you but we will not be returning.
Our first appointment with the new clinic wasn't starting off on a great foot because his new therapist had to cancel the first two sessions for a family emergency. Then I had to cancel the next one because he had hand foot and mouth. We finally had a week that everything was good, and headed to our initial intake appointment. I was put at ease right away when I met this new therapist, she made me feel so comfortable, and reassured me about everything Beckett was doing, and thought everything the other OT told me was absolutely ridiculous. Didn't question once that he drinks from a bottle, and was honestly so impressed with everything he's doing (aren't we all!) I'm so grateful I followed my gut and left UTMB because this therapist is the sweetest. (No one is better than Stepping Stones though 😉) He is on the waitlist for them to be getting speech as well in addition to what he gets at school. He really should be getting weekly PT but I don't know of a clinic that offers it locally and I have a bad taste in my mouth for the big branches now, so finding a smaller clinic is more our style.
His Ophthalmologist checked his eyes and wanted us to try patching his left eye. I bought patches and they've been sitting in a drawer since. His opinion was that maybe we could strengthen the right eye since it turns in, it lags sometimes, and maybe he'd be able to rely on that side for more vision than we think he's seeing at this point. It's an interesting perspective because his first two ophthalmologists said patching wouldn't benefit him and if there's one thing about Beckett, he's adapted to what his capabilities are. He's managed to learn to walk with the vision he does have...maybe he runs into things sometimes, especially in a new place, but he's so strong. I don't love the idea of taking that away from him in an experiment when he's doing so well with what he has.
We've continued to have hearing checks every couple months with his audiologist. They're doing their best to get more data on what he's hearing leading up to his next sedated ABR which will be this fall. Following last year's ABR, they suspected he had ANSD, meaning the nerve in his left ear isn't always firing, and this would make him a candidate for a cochlear implant. Over the last appointments, they've been able to get some good info, and not so good info, suggesting maybe he does have ANSD on that left side. We will have another ABR in November to see what that reads and see if a cochlear might be the next best thing for him.
This summer he's started being more interested in food, and at school they extended the hours so he's now there long enough that I provide a lunch in addition to the breakfast. Everything he can eat has to be small and easily swallowed (rice, time shredded of chicken, mandarin oranges, pancakes, ground beef, refried beans) one of his favorites is a grilled cheese, and he loves a Cheeto puff. We're continuing to try and introduce more foods and help him do it independently.
He's still scheduled to go back to the Napa Center in December, but with so many things going on here, I'm trying to push it back to the spring, depending on what else we figure out for our living situation in the next 8 weeks or so.
Bonus life update: if you didn't already know, Regan is back at Ft Hood working on active duty orders until at least the end of February. After that, we aren't sure what the next steps will be. He has the option of staying there for longer, in which case we would all likely move out there to live together again, but that means selling our house that we have only lived in just over a year, which brings on another level of chaos, so who knows what comes next. We're in month 4 of this 9 month rotation and personally it's getting harder at the end of our weekends together to say goodbye, so if we can figure out a way to be together sooner, we will try. What we do know is sometimes you have a plan for life and then God says "don't get too comfortable", so as always, stay tuned.
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