May 22, 2010
Questions and Answers
1) What is the actual name of the condition? Leukodystrophy. Leuko means "white" and dystrophy means "not working right". Specifically, they suspect it's Canavan's Disease. (They did a genetic blood test to see if it is that one or a different one.)
3) What do children with Canavan's die of? Children with Canavan's die of respiratory failure. The Pulmologist said there are 2 ways this typically goes. They take a steady decline. OR they are declining and then one day get an illness and they can't recover from it.
4) Where are you mentally? I did all the hard work of facing the diagnosis, the prognosis, getting THEIR opinions on the situation. I made the plans ... for hospice, home health nursing, DNR, etc. Then when I drove away from the hospital ... I left it ALL there. We are now headed into life. God sent a wise woman in my room at the precise moment I needed it. She told me to make all the plans and put them to the side and the get on with living. So that is what we are doing.
6) Where are we spiritually? We are spending a lot of time praying, claiming scriptures, binding/loosing, laying hands on, etc. We're leaving no stone unturned spiritually. We're asking for every prayer warrior we know to pray for this .. to take Manny's name before the Righteous Judge. God is showing us He wants to be made FAMOUS. Every morning and night I have a long routine of medicines and treatments that I am supposed to do for him. While I do this, Dan reads healing scriptures over him. I do the physical medicine and Dan dispenses the spiritual meds of the Word.
7) Comments and Emails ... we are getting many comments and emails. While we cannot possibly answer each one please know that we read each and every one. They are all giving us peace beyond understanding. We can truly tell we are being prayed for and lifted high before the Almighty. We are very very thankful for all of you in our lives. We are truly blessed.