It's heartbreaking to see how tired Brianna is now. She has been taking cat naps periodically through the day yet when she is awake, she is her usual happy, rolling, sitting up self. Her little body is getting so tired.
We almost got through a night without alarms until 3:04 am....and then today I was on the phone with a long distance dear friend, Martha Bravo (the photograph who has taken the most amazing pics of our family) when Brianna's heart rate spiked to 256. In total shock I hung up on Martha and concentrated on Brianna (with Jerry). It came right down but boy did I feel like I needed a stiff drink after that one!!!
We had a very good visit with our friends Steve, Ibis, Jim, Karen, Vance and Theresa this evening and they brought over a wonderful "comfort food" dinner. Good friends, good food and good times. Thanks to you all!
It's been a very difficult week. Today Jerry had Bri's pediatrician sign the DNR (Do Not Resusitate) form. Learned something new about this. If by chance we were out and Brianna had an episode and an innocent bystander called 911, without us having the original DNR form on us, the EMS would HAVE to do whatever is necessary to keep Brianna alive. We would have no say whatsoever if we did not have the original with us.
I also called the funeral home to arrange for a meeting next week. This stuff is so unbelieveably hard, I guess by blogging about it, it helps me....sounds crazy I know. It is crazy and so very wrong.