I am riding in the backseat with Kiran right now, an early morning drive to Iowa City. We see every specialist he sees, save ortho, today. It has been four months since we have seen most of them.
Kiran has been off ALL meds, including eye drops, for just over six weeks. I feel like I am bracing myself for that to change, though every part of me hopes it doesn’t have to.
My anxiety is great this morning. I know we have decisions to make – his one year post-op cath to schedule, for instance – that I don’t want to have to make.
I am so thankful – and so enjoying – how our life has slowed down. I love that medical appointments, ER visits, hospital stays…are no longer a normal part of Kiran’s life. I was just processing this yesterday: We have not had an ER visit or hospital stay since Kiran’s open heart surgery. Not one. In ten months. His first ten months of life were very different.
Prayers and good vibes and positive thoughts and virtual hugs all appreciated today. It’s going to be a long day for all of us. I hope to update with good news on the drive home.