12-30-10

Well this morning was fun. The American Heart Association is going to do a traveling Heart Hero’s Portrait Gallery kind of thing, that is going to go all over Lincoln, and will have fundraisers, volunteers, heart survivors, and their families, and we are going to be part of it. John survived his heart attach, and as is obvious by all the doctor appointments he still continues to go to, it’s a long recovery, but he is getting there, and I’m proud of him for all the work he puts into trying to get healthy. Quinn was born with Transposition of the Great Artery, and that is what has lead to the brain trauma she currently has, and she also continues to improve, and I started being proactive by getting involved in the heart healthy program, and am now back to exercising on a regular schedule, so all three of us have a heart story. Shane and Sunny from Shane and Sunny photography studio, took our photo, and me being the person I am, brought a few new ideas into them, as we can’t just take a regular picture, we need a little something different, so I’m curious to see what image of us goes into the exhibit. I’ll let you know when it starts.

We have also had our big doctor visit extravaganza. We started on Tuesday and saw the GI doc. We are one med less then when we started, and I’ll take that. Wednesday was the Children’s Developmental Clinic, in the new part of Children’s Hospital, and wow, that new part is nice. It’s fun and very colorful! We got there at 8:00, and took her baby doll and her duck and a few other items to play with, as it’s an all day’s event. We sit in a room and all the staff come to us, so it’s nice. We saw: all kinds of therapists, bone doctors, neurology, general docs, social workers, dietitians, hip doctors, and a few other folks. Then they did a huge blood draw, I feel like I need to give Quinn some extra fluids to make up for all that blood. Then a few x-rays’ and a scan to see how strong Quinn’s bones are, and the only result we got back so far, was that her bones are strong!

To finish up the day we had another appointment with ENT, to look at the trach site. I have to say sometimes it has a funny odor, and I’m still learning what to do, and how to care for it. The appointment went well, and we are switching a few meds around to different times of the day to see if that helps us sleep past 3 in the morning. I’m not sure how much longer I can do that, and Quinn does not mind going to bed at 5 but I have things to do, so that is not an option! So I’m always ready to learn. It sure is nice to have a few days off here, to take care of all of these appointments. A few naps would have been nice, but checking off so many doctor appointments is also nice.

Today we finished the doctor appointments with a bit of a late 4 year check up with our primary doctor, and I have to say it’s nice to go in for a check up, and not have any other issues to talk about. This trach really was such a good thing. Quinn is doing so well with it, and I can tell that I’m not as stressed now, as I was the month before it happened.

So our break has not been one where we lay around the apartment and play and dance, and paint, and sing, but getting all these appointments checked off the list, is pretty good as well. We are also finding a bit of time to play around too, that is when she is not napping!