Christmas Eve

 Macsen and his sisters had a great time at our church’s Christmas service Our church is pretty special and has train rides, s’mores and hot chocolate to celebrate the birth of Jesus mac was a little scared of the grinch though lol

Are the smaller planes less pressurized?

Ugh - Mac started complaining that his arm hurt, and his back and his hand etc before we left Dothan. He fell asleep - highly unusual for him. Now at home he has a 100.4 degree fever. We sanitized everything he touched on all the planes and his hands dozens of times at the hospital but he must have picked something up. Praying it is short lived. We are wiped from this trip. Already making contingency plans for if this gets worse.

Update: He was fine after about 36 hours. It wasn't a virus. I think it was his body compensating for the flights. We won't take the little plane from Atlanta to Dothan anymore. It adds 8 hours round trip of driving but I think the little plane isn't as pressurized or something and it makes him sick.

Good bye for now Boston

 DeIcing the plane before we can head home 

Appointment updates

 Appointments all done and everyone is encouraged with how well Macsen looks. He had an hour long echo (Daddy got him a sandwich in the middle bc he needed more calories ASAP!) EKG, pacemaker check, labs. His heart is squeezing better, his pacemaker looks good and they even talked about dropping his settings down so it would only kick in at 70 bpm but they are going to wait until we are back in a few months. Some amazing news is his BNP is.... drumroll please .....114!!!! That’s amazing news - especially considering earlier this year it was 3000 when his body was shutting down. It hasn’t been that low in over 2 years. His Dr thinks we can go to heart caths every 2 years if he continues on this course - he has been getting them every 6 months or sooner until now. We are upping his heart function meds a little.

When we came out of all those appts Children’s was giving away stuffed animals in the lobby and he picked this big pup - he will make a great pillow on the plane ride home in the morning. Lauren (pictured) coordinates their giving programs at BCH and she sweetly remembered him from previous events. The snow turned to sleet so walking around the city is out. We will just spend the evening at the Yawkey and fly home tomorrow morning. Quick trip but so worth it for the care we get here

At Boston children

 This is how Mac waits for his appointments lol 

Boston snow

 So the plan this morning was to get ready super early and get blood draws at 8 so results would be ready for his appt at 11. But the snow!!! We had to let him play in it for a little while. He loved being the first to make tracks across the fresh snow - like the first man on the moon. Then we found his favorite thing - a can of chicken noodle soup in the shared food pantry for breakfast and caught the shuttle to the hospital. Totally worth not rushing around . Check out this amazing gingerbread hospital

0:06 / 0:16

Arrived Safely in Boston

 Welp, after an extra-long (6hr) layover in ATL, we finally got to Boston. Our 2 hr delayed flight to Boston was finally getting towed out and it broke the towing mechanism somehow. So they pushed us back. That had to be checked out then the flight staff , who had already worked 15 hrs, had to ALL LEAVE bc they have been working too many hours today. So they had to look for a fresh crew. What in the world? Thank goodness for the movie player. We were supposed to get here at 6 but we ended up arriving very late. Poor Lyft driver didn’t know how to get to the new location for App-pickup at the airport.... but neither did we. Yay! Drive to the Yawkey was quick and painless and now, at 11pm EDT, we get to our suite (aka it has its own bathroom)! Total travel time today: 13hrs.

Thanksgiving was amazing

 This boy had a wonderful Thanksgiving trip to NC to hang out with family. He got to go hiking and he did really well - he only needed to be carried about 1/2 the time (Aaron is an amazing sherpa.) The falls were gorgeous. We got to stay in the most beautiful VRBO we’ve ever stayed in - right on the water. We just had a wonderful, wonderful week.

Macsen lost a top tooth

 Guess who FINALLY lost his top tooth that has been hanging on by a thread for a week! Woo hoo! We’ve been trying to pull it but after the first few attempts he wouldn’t let me near it Apparently a friend suggested he pull it on the playground so he did lol! He forgot it in his locker so he wrote the tooth fairy this note.