We came home yesterday and crashed. Over the last three months, we collected a lot of stuff during the summer. Every weekend Nate came up, he would bring stuff off a list I gave him, so when we came home, we drove our van and my father in laws car stuffed of things we collected. It was bitter sweet to come home. The girls had such a fun summer, and we had so much help from family and friends, but it was nice to be home and be a family. We can't thank everyone enough for sacrificing all your time and energy to stop what your doing and help with the girls, or come visit in the hospital. And if you were praying for us, we know that the power of prayer is real and has blessed us over and over. We were able to get through these trials because of your endless prayers. So, thank you.
The appointment for Ellie went really well. They said she looked like a different baby. The cardiologists did an EKG and a chest x-ray and they were good results. They didn't do a echo cardiogram because they thought they didn't need to unless there was a reason to worry. We don't have to be on oxygen during the day but she still has to be on it at night, yeah! You feel so tied down when your on it 24/7. I am just leaving her tabs on because their so rough on her skin when we change them out. If anyone has something that gets these off better, let me know. So we have a follow-up in four weeks. Pray for function increase. Her function is at 23-29 percent and her cardiac output is at 10-13 percent. It's a little scary that one can be living off of those numbers. They would like to see a change in the next month to two months. Once cardiomyopathy happens in adults, it is very hard to see any sort of recovery, but in children they have a better chance at seeing heart repair.
So, we settled in last night and the girls were off for their first day of school. Yes, I do have other kids. Adrie got in the car and shouted, "that was the best day of my entire life." Which I hear often along with, "this is the worst day of my entire life." Oh the life of a drama queen! We already love our teachers. They have been really good about missing the first week of school and seem to be a good fit for the girls. Ellie seems to be sweating a lot more down here but it is 106 degrees today. She really seems to be working so hard when she eats too so we will just watch that. Sorry for the long post but I had a lot to report. Miss everyone already!
Biopsy and Fun
1 day ago