Day 8- Happy one week little guy!

Wishing our little guy a very happy one week birthday. Love you my little love.

He got down more on his dopamine which is great, as he will be most likely weaned before surgery. Today was mostly uneventful as well. He was awake a lot more. During this morning visits he took turns holding Ajit’s and my finger and it was an awesome awesome feeling. Your whole world suddenly seems normal. He was feisty and did not want to take hold immediately but when he did it was awesome.

He is staying on pretty low vent settings and is liking it. Seeing him awake more is making it harder to leave him. I wait till he falls asleep to leave. Holding his fingers and tapping it gently makes him sleep.

Each day he is growing stronger and we are getting prepared to handle the journey after the surgery which is long and hard road by itself. Sometimes thinking about it scares me a whole lot, but I also know it is the next necessary step in working towards fixing him. Like I tell Avy ” He has a boo boo and it needs to be fixed”. Simple enough I guess…

Holding on…