So much to be grateful for...
Had a really nice Thanksgiving at my Mom's house with 14 of us. Simon got to have a whole suite in the master bedroom upstairs and had a few good naps. He sat at the table with us and played with some cranberry sauce, turkey and mashed potatoes (didn't eat anything but got to mush it around a bunch).
Then, tonight when we got home, Laura checked his heart rate before giving his Digoxin and, for the first time in probably 3 weeks, his heart rate was under 100 while he was sleeping. This is AWESOME! We had to call the cardiologist on call and get approval to give it to him anyway and had a nice chat with the doc. She was happy to hear that he was doing well.
We also forgot to bring the MCT oil with us to Palo Alto and lo and behold, Simon did not throw up all day. We are going to check with the team to see if we can stop giving it to him and see if he can still gain weight. That would be awesome because he pukes about every hour or two and it's really messy, not to mention unpleasant for him.
We didn't get a chance to say what we were thankful for at dinner so I'll reflect a bit now:
Simon is out of the hospital
Simon's heartrate is under 100
My Mom's house turns out to be a great place to be with a baby
We can afford (barely) to have Laura stay home with Simon
My new health insurance, while costing 8 times my other coverage, will cover all Simon's doctors
We have incredible friends and family who are helping us get through this
We both have great coping skills (that are being thoroughly tested)
I was able to find a new job that I'm excited about
Simon is alive
Roxie was an awesome dog at Thanksgiving
Laura and I are healthy
All of our parents are alive
We have two cars we like that are reliable and affordable
We have a fantastic apartment that fits us and all our stuff
Our kid is not half as sick as a lot of the kids still at CHO
Simon got to meet his great grandfather on his last visit a few weeks ago
We have a washer and dryer
We have a dishwasher
I am not doing this as a single parent
We have a fridge full of food and more coming
For these things and so many more, I am grateful. More to come in a few days, perhaps...