Update ... not much to report

Other than being glad to be home (while missing the comfort of constant monitoring), there is not much new to report. We're worried because Annie has lost eight ounces since Saturday. She went back on Lasix (a diuretic) Sunday morning, but eight ounces seems excessive ... and it's just a bummer because we were so excited about her weight gain last week. We have touched base with Annie's doctor (more about that in the next post) and they have ordered the bloodwork we were expecting this week. I also spoke to Annie's cardiologist here in NH and caught him up on what went on at Children's. We'll see him next Monday morning, and they may even fit Jamie's echo in at the same time.

We said goodbye to my mother yesterday, as she headed home to Missouri. The reality of all of Annie's meds (the logistics as well as WHY she needs them) and the juggling act of managing Jamie amidst Annie's doctors' appointments has set in, so I selfishly have to admit it has been a rough couple of days. Packing a bag to get out the door is epic now -- milk, ice, special bottle, two types of powders to go into her milk, pills, syringes, bottled water, scissors for cutting capsules in half, cup for mixing the powder from the capsule with water ..... It's like starting all over again when we first had Jamie and had to learn how to pack a diaper bag every time we left the house! I know we'll get the hang of it, but it's a bit overwhelming right now.

I received a welcome packet from the Children's Cardiomyopathy Foundation yesterday. Wow. It was a lot of information and a lot to take in. Reading through everything threw me for a loop (again, selfishly). I'm also on their list serve now, and reading back through old messages has been daunting. There are so many kids with heart transplants! There is also someone else who sings Dr. Smoot's praises and a few families that seem to be going to Children's in Boston. I believe the entire list is 300 or so families worldwide. That's a testament to how rare this is (6 children per million, approx. 10,000 children living with cardiomyopathy in the US I believe is what I read). There is some discussion going on now about new genetic testing for dilated cardiomyopathy. When I think about a genetic link and any possibility that Jamie might be affected, I can't even breathe. Please, please, please let her echo be perfect!

On a happier note, I have not had to give a second thought to getting everyone fed. :-) Thank you, again, to everyone at BYPC for all of the wonderful meals. You'll never know how they are getting us through and keeping us going -- literally.