The New Normal...

Well it's been a week since we discharged and man is life different. We knew it was going to be but reality is a different animal. We are trying to hold onto the small victories with Harrison and figuring out how to get in all of the cares he needs. Needless to say, it isn't easy. We have an amazing set of nurses supporting us but one of us always needs to be around just in case there is an emergency with his trach. We've been getting endless shipments of medical supplies that are sometimes right and sometimes "iffy" (often sadly). When they are the wrong item, we are told to throw them away which is hard to accept. Thankfully we have a friend that hosts a Special Needs Garage Sale (free) a few times a year that can store this stuff. I did not realize that we'd be trying to manage and account for all these supplies...makes for a challenging spreadsheet! That combined with my working schedule and trying to prepare for a new baby and going on paternity leave for a quarter is just hard. I know we'll figure things out eventually.

Harrison's days have been spent sleeping a lot, doing lots of stretches with his nurses, and getting up in his chair to watch Christmas specials with the family in the living room or just hanging out in the kitchen while we're cooking dinner. While we were in the hospital, he got 2-3 breaks from the ventilator and we're averaging 1 per day right now. I think we'll up the average here in a bit once our nurses feel more comfortable identifying good times during Harrison's day to initiate and monitor a break. He is very much into Clifford the Big Red Dog, Sesame Street, Curious George, and Little Baby Bum. Thank goodness for tablets! We had our first virtual follow up appointment and it was nice seeing a familiar face with the outpatient Palliative Care team. We have another one tomorrow with his Pulmonologist and we're curious to see how that goes.

MariClaire is about as pregnant as you can get...and she's gotten to the point where anything dropped on the floor is dead to her haha. We can't believe it's only about a week before the baby is due. Little Harriet needs to hurry up because we're excited to meet her and I'd hate to have to combine Christmas presents with birthday presents lol (just kidding).

Much love to you all. Thank you to everyone who helped us get home. It was a long journey and we really appreciate all of the efforts from "our village". Here's some pictures from discharge last week, MC's drive-by COVID-friendly baby shower, and general pics of life at home. There's a special video at the bottom showing our amazing/emotional send off from our friends at FA3 Seattle Children's.