January Appointment

Another appointment in Birmingham in the books before our big appointments in Boston in a few weeks.
MAc's local cardiologist said his heart function wasn't any better (but not worse) nut jis labs are awful. BNP over 3000 now. Kidneys showing further strain. I hada hard talk and we will have to list him for transplant based on all this decline :( I do want to see what Boston says before we do that and talk to them about our options for listing. They say alabama hasa goodtransplant program and from what I've seen of the kids I've met it does look good.
Mac continues to go to school full time but he is so tired, and cranky bc he's not feeling great, and he's not eating well. Such a change from how he was doing after the pacemaker was placed.I really thought it was working but not now.

Merry Christmas

Merry Christmas and Happy New Year! Mac hasn't been feeling great so even little adventures - like traveling to another close by city to see fireworks or visit a Christmas village - would be miserable for him. I'm not hopeful this pacemaker is helping him at all at this point. We are grateful we were able to spend the holidays in our home, all together though. Macsen performed The Twelve days of Christmas with his kindergarten class. He was adorable and absolutely belted out everyone's favorite part of that song "FIVE GOLDEN RINGS!!!" Everyone in the audience cracked up.  We attended our wonderful church's candle light service and rocked out to their amazing music lol. We set off fireworks with our friends in our front yard which the kids loved.
I'm afraid though we are headed for transplant very quickly.