I am more than a week behind on updating about our latest Iowa City trip. I am not as compelled as I once was to catalogue the medical appointment part of our journey – but I know I sometimes look back to remember.
Wednesday afternoon, Kiran saw his orthopedic surgeon, a routine follow-up for his rocker bottom foot. Dr. M. continues to be happy with how his feet look, but we have to keep wearing the brace at night. For the last three appointments, I have held out hope that this would change. Kiran doesn’t care. He doesn’t know any different. He has worn that brace overnight every night since he was two months old, after the casts came off. But for me – I just keep thinking how nice it will be to cut that from our bedtime routine.
I did finally ask the question that has been at the back of my head for some time now – it’s funny how sometimes you just know you’re not ready to hear the answer to a question, in case it’s your worst-fear answer. I often tuck questions away for months at a time, until my brain and my heart are ready for worst case. In this case, Dr. M. always asks about how his standing is, how his walking is … he has always said kids usually wear the brace until they are independently walking. So I finally asked – if that never happens, what kind of timeline are we looking at? Will he have to wear the brace forever? Thankfully, the answer is no. Kiran will likely have to wear the brace for another year and a half, until he is five years old.
A load off my mind. We have a light at the end of the tunnel.
Thursday morning was feeding clinic. Nothing monumental happened here, but it was another good appointment. I have been initiating conversations about taking a break from feeding therapy, both with our local therapist and we discussed it with our team at this appointment. It is such a difficult decision to make, and we won’t decide anything until our regular feeding therapist has a few weeks with him – she is back next week from maternity leave, and we want her to see where he’s at and have some good discussions around break versus no break in therapy.
It’s just that he has been in feeding therapy for over two years now, and though we have seen some good progress, I feel he has reached a plateau. Or at least I felt that way after his last swallow study last month, before he started doing some bites of banana and avocado successfully over the last few weeks. The problem is – we’ve been to the banana and avocado stage before, several times, and then had to inevitably back off from them. Purees and meltable crunchies have been the deal, for a long time. And in email communication with our feeding therapist, she agrees that Kiran may need to be here for awhile yet, until he makes some significant gross motor progress and gets stronger overall.
I feel like I am at a place, in all areas, where I just want to know where we are going. I want to know if it is all worth it, the schedule. Not only does he have preschool four mornings a week, but we go to Childserve two afternoons a week, for two therapies each visit. And I am ALL for it, when I see progress. But I was long ago told that there will be times of plateau, times that a break makes sense, times that he should rest in one area so he can focus more on another…..
The decisions just aren’t straightforward. Because we also have to think about potentially losing our feeding therapist when we take a break and – even more so – losing our therapy spot, which works well for Kiran’s schedule.
It is never about me, though the schedule often exhausts. I just want to make the right and best decision for Kiran, and it’s not always straightforward. I rely on the upcoming conversations with the therapist who knows him well and knows the trajectory of his feeding over the last two years.
It is good we have good people in our corner.