A Graduation

Today, Kiran did graduate from something. Something that has been a part of his life since he was two months old!!!!!

No. More. Brace! Dr M was pleased with how his feet look and by this age, it is very rare for the correction to reverse, so he no longer needs to wear the brace at night to hold things in place.

This is going to make our bedtime routine so much easier. It’s one less thing for me to train caregivers on (for that great someday….), and it’s one less thing to go back and forth between houses.

A very quick, easy appointment today. Kiran didn’t mess with his mask at all, and we only went through two since we were in the hospital for less than an hour.

I’m thankful for the good news today. And the quick and easy appointment. Headed home tonight. Tomorrow, we head back this way for a Covid test, then spend the night for an early sedated MRI Friday.

This mama could use good thoughts and prayers, especially for sleep. I hardly slept last night, as the anxiety starts to creep in.

Lift us up this week. The road feels particularly long.

A Step Back – Feeding Edition

This week, there is a lot. Just a lot. This will probably be the first of many blogs over the course of the rest of the week. Some of it I knew was coming this week, and other pieces, though not surprising, were not in my calendar.

Kiran’s feeding therapist today made a professional recommendation for Kiran moving forward. She feels it is time to take a step back. Take a break. Stop feeding therapy. Not because he’s graduated out of feeding therapy – not even because he’s gained some tremendous new skill and needs time to perfect it. No. It is because, for the past two years (He has been in feeding therapy for nearly three and half years, now), he has been taking a step forward and a step back and three steps forward and two steps back and a step forward and two steps back…and – did you do the math? – ending up largely in the same place we started.

This isn’t news to me. I have written and processed so many times about the roller coaster that is feeding. It’s HARD. But it’s not a surprise. However, her timing was a bit surprising. We had been trying some things from a different angle, and I didn’t quite see it coming so soon.

So. How am I feeling about this? Honestly, the overwhelming emotion is relieved. It makes sense. Kiran is making progress slowly and steadily in every other area, and feeding has just been circular. He needs time to get stronger and progress with gross motor movement – and even some fine motor movement – before he will truly have the skills necessary to progress beyond where he is with feeding. I liked how his therapist put it: It’s just not a priority for him right now.

And he’s fed, safely and effectively, through his g-tube. He is fed in small quantities with safe food and thickened water for practice and pleasure. And honestly? I feel like he could care less. This kid is just not motivated by food. It is me that has to grieve this right now. He’s fine. And more importantly, he’s safe with what we are doing, with where he’s at with his skills.

And ultimately, even if the feeding tube is with us for the duration of his life, I’m okay. Because it means HE is here with me. How amazing to live in a time like this! Truly. I am so thankful for that darn tube. I am so thankful I can blend real food for him and put it directly into his stomach. Safely. And he can continue to grow.

It’s a long road ahead, but we journey together. The next three days, our journey takes us to Iowa City….

Censored

I haven’t been writing as frequently as I would have been. I struggle when I cannot be my full authentic self. But I can’t be, and that is part of my reality right now. I still need to process.

Kiran recently had a new diagnosis added to his chart. Frey’s syndrome. It’s rare (Is that even a surprise anymore?). Because he is almost five (what!?!), there is a concern about it popping up now. He has an MRI and bloodwork scheduled for the end of this month.

Provided the bloodwork and MRI are normal and don’t show any signs of trauma/lesions/tumors…we can just monitor symptoms. But if the symptoms – again, this is the unilateral redness we’ve been dealing with since the beginning of 2020 – persist, oncology/hematology may want a full work up with extensive imaging.

I find myself in this place so frequently, I feel. It *could* be this terrible, horrible, no-good, very-bad thing….but it’s likely not. It might just be this totally benign, uneventful, no-worries kind of thing.

It is part of the narrative that is our life. I will tell our story as long as I have breath – or dexterity.

And we will continue our journey. Together.