Waiting Stinks

Monday will mark FOUR WEEKS since we did the blood test for Ethylmalonic Encephalopathy. They told me it would take 3-4 weeks to get the results. I will be calling first thing Tuesday morning to see if they've heard anything. Please cross your fingers, pray, whatever it is you do ... this diagnosis would be devastating. I would MUCH prefer her to have Cornelia de Lange Syndrome!

The kids start school on Wednesday. As PTO President I have already gone back a few days over the last two weeks, to get things ready to start. We have had a relaxing summer, I wish it wasn't over!

Tomorrow we are taking Jake to Walking With the Dinosaurs, while Emily stays home with her nurse. Jake is SO excited! :)

Be careful what you wish for

We may have "the answer" to Peanut's underlying condition. We are waiting on information on how to run the blood test to confirm. The only lab that can diagnose this disease is in Italy. Our insurance doesn't want to pay to send the blood there. We are working with a metabolic geneticist to figure out how to get the blood drawn and send it to Italy.

I don't know what to ask you to pray for. We have always wanted "the answer", the diagnosis, the bottom line. But if this disease is the bottom line, it's not good. :(