I want to give a brief update on Kiran – the fun kind – before I have to give all the medical updates in the weeks to come. We have some big appointments coming up. Tomorrow is a swallow study to make sure there isn’t a medical reason (aspiration being the big one) behind him not wanting to eat much orally. Thursday, we have a genetic follow-up; we haven’t seen genetics since birth. I just got off a 45 minute phone call updating them on Kiran (This was after being on the phone for an entire hour with my insurance company this morning regarding his synagis shot for the month of December…the joys of this medically complex life). Friday, we head to Iowa City again, this time for his lung perfusion scan. And next week Friday – finally, finally! – we have our feeding evaluation at Childserve. Big weeks in the life of a little man.
Feeding. I love giving Kiran real food through his tube. I am currently blending my own, and we are still in transition (so we add new food groups every so often, mixed in with his infant formula still), but it seems to be going pretty well. I especially love syringe feeding. It makes me feel more like a normal mom feeding her baby. The pump was necessary – and it was fine – but it felt really clinical and mechanical. I much prefer sitting down with him and feeding him slowly. It’s more interactive, and it does wonders for this mama’s brain.
Kiran is now able to tripod sit for over a minute at a time! This is huge; we have been working every day on his core getting stronger, and he is doing wonderfully. He also willingly kicks his legs up toward his face and rolls to his side – and he can now even find his toes with his hands most of the time. These all seem silly, likely, but to us, they are a HUGE deal! Progress is being made! Probably most exciting of all, he is starting to sometimes willingly put some weight on his feet. Anytime we used to try this, he would lift his legs and refuse to even put his feet down. Again – progress. And he’s chatting more and more – his consonant sounds started a few weeks ago – love his babbling so much.
The upcoming appointments feel overwhelming. I seem to drag my feet when it comes to the medical stuff lately, because I am just enjoying the more normal stuff…the time at home…even the therapy appointments. But it’s all necessary. Hoping for many (good) updates in the days to come!