May 22, 2010

Questions and Answers

Some random questions I've been asked:

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.) 

2) What is the prognosis the doctors have told you?  Children with Canavan's can live up to their teens.  But the sooner they show symptoms, the worse the prognosis.  Manny had symptoms at birth.  In addition, the MRI at birth showed a completely normal brain.  At 8 months, the CT showed it was only in the posterior of the brain.  And at 10 months the MRI showed the whole white matter of the brain completely diseased.  Therefore they are calling it "End stage".  The fact that the EEG showed no seizure activity is a good sign.

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.

5)  What now?  We are home and trying to figure out how to do daily life things.  Soooo much has changed.  From small, subtle changes to huge differences.  My brain is working towards a new plan of how to do everything.  My biggest concern is how to keep the baby safe.  I don't want him to live in a proverbial bubble.  I don't think that's any kind of life.  I don't want the kids to be like, "Oh I remember Manny .. he was the kid locked in mom's room that we never saw."  But I also know that there are germs everywhere and one infection could be devasting for him.  So I don't have this balance figured out yet. 

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. 

1 comment:

  1. If you haven't already, you should get in touch with Dr. Paola Leone at UMDNJ.

    Also, check out for more information.