September 21, 2018

Dean and the boys are here for the weekend! Yay for me. My mom and step dad, sister, brother in law and nephews are all coming down as well. It’s a bit of a juggling act when the boys are here. I miss them SO much when they’re back at home, so I try to spend as much time with them as I can with them when they’re here. It’s hard being away from Killian though. Dean gets to go see him lots, but it’s a very hard thing to be apart from your new born baby. Lots of guilt if I’m not with the boys, lots of guilt if I’m not with Killian. But we’ll keep trying to make it work. Right now we’re in a single room, so bed time is tricky lol. Four of us in one room…and one of the boys seems to wake up at 530 every am lol.

Killian had a good day. He went for an MRI today, they’ve seen something on his liver, so they need to check it out and make sure it’s nothing serious. I feel like there can’t possibly be anything else wrong, right?! Hopefully we’ll get results tomorrow.
He was sedated, but came out of it well. He’s sleeping lots now, his little body has been through so much in his 2 weeks.

When he’s awake he is SO alert. Follows us around with his eyes and really focuses on your face. Yesterday a music therapist came in and she played him some songs on her guitar and sang for him, then brought out chimes to let him hear them. He couldn’t keep his eyes off of her which was really neat, she was even surprised how closely he was watching her. I of course cried like a baby as she sang him old songs I knew like Baby Beluga and You are my sunshine.

I’m getting into a system here, and feeling involved and busy, and then something as simple as a song comes on and reminds me that this is such a scary time. Keep thinking about my little Bean. With his type of heart disease things can change at the drop of a hat. So I make sure to kiss him and look at his little face and tell him how much I love him every time I leave his room. So do that with your people too.

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