Tuesday, September 08, 2009

The Week Begins

After a weekend of catching up on household duties, I spent the better part of today on the telephone. I arranged my talk time with Aimee (Maddie's Mommy) and Qavah's doctor around her movie watching time. I don't think "grown-up" talk about bone marrow biopsies and research is good for her. So while she watched Chitty Chitty Bang Bang for the tenth time, I was on the phone. She isn't able to express to me why she loves that movie so much, but she asked me to sing a bedtime song from that movie called Hush-a-Bye Mountain last night. I did my best with Edelweiss from the Sound of Music instead.

I've been in touch with Aimee about trying to get our little girls to Johns Hopkins at the same time, since genetically they have a common chomosome deletion. Qavah's geneticist here in Roaonke will be receiving Maddie's records hopefully by the end of the week. The geneticist will set up the appointment at Johns Hopkins. Aimee and I would be so thrilled to go to that appointment together with our girls. We are praying that it will happen all in God's perfect time. Please pray that they will be able to get an "Angel" flight from Phoenix to Roanoke or Baltimore in order to make the appointment.

Aimee and I have such a strong driving desire to get help for our girls. Our goal is to find a drug that will put this blood disorder to rest so that Maddie and Qavah will be able to live a normal life. This is a high calling for a couple of mommies. It is a good thing to have the Most High God hearing our prayers for a break through.