We had such a lovely two month reprieve.
On the road again, headed to a GI appointment to discuss granulation tissue. Kiran’s site doesn’t look concerning but the tissue is still present – we just have zero experience with this so hoping to educate ourselves today in general. Really hoping we don’t have to use silver nitrate to burn it off. That simply doesn’t sound fun for anyone involved.
The real dread has set in for our second appointment of the day: a swallow study. The last one did not go as expected, and we had to take some significant steps back in oral feeding.
I continue to be in awe of the amazing team we have in place for Kiran. His local feeding therapist, who has been working with him for the past two years, insisted she wanted to be present for this swallow study. She wants to be a more comforting presence (since Kiran knows her so well) and an extra set of eyes for us. Here’s the clincher: She is on maternity leave and traveling to Iowa City with her newborn. For Kiran. This was not something we asked of her or insisted upon.
Kiran’s team cares, and it blows me away. I am thankful and will never take it for granted. Some of the members fell into our laps; others we worked hard for – ALL of them are dedicated and passionate about what they do. They go the extra mile, and I am so amazed and humbled and grateful.
Kiran is so, so loved.