Brave and Strong

Generally speaking, today couldn’t have gone more smoothly. Kiran did really well during his echo, with mama’s songs and daddy’s stories to keep him calm. He was definitely more aware of everything – and a bit more curious and concerned – but he calmed down quickly whenever he got riled up.

Dr. R said everything looks good and stable with his heart. He didn’t see a change in the size of his right ventricle or thickness of the right ventricle wall. No real change with the conduit – still just minor leaking which is to be expected. The plan moving forward will be less invasive monitoring until something changes. He was thinking rather than going back in the cath lab, our next closer look could be an MRI of the heart, which still allows them to measure pressures. All around just really positive news here!

GI Doctor was mostly an update and some questions. She is going to refer us to have a consult with an entire feeding team – GI Doctor, SLP, child psychologist, etc. – to determine where he is with his feeding and if/when a more intensive feeding program would benefit him. She said they are generally done around age 3-4 and when skills are pretty good. We will see what the team says when the time comes – it will likely be at least 3 months out.

Endocrinology was just updating. We didn’t have any concerns, and she wasn’t seeing or hearing anything that would indicate any gland issues. She did draw labs, and it went surprisingly well. It helps to ask for the best – I am certain this is the first time ever they’ve gotten blood from him with ONE poke! He was just a total rockstar. I know I say that every time, but I am just amazed at how cooperative and easygoing he is. Every time. He just amazes me.

Dr. R. is putting a referral in to the Center for Disabilities and Development. We had been followed by a specialized nurse at the hospital, but that ends at age 2. That will be a whole other assessment with regular follow-up appointments, but we are looking at probably a six month wait for them too.

So. Kiran continues to be medically stable, and his biggest concerns continue to just be development and feeding.

I’ll take it.


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