Zellweger's Syndrome

Hi everyone,

Michael and Esther asked me to help keep the blog up to date at this time.








They have their hands full with two at home, running a business and then on top of all that waiting.








So, we will do our best to pray Gods will. And ask how we can be of help. And when we don't know what to say, say nothing at all.



On October 21st Elianna was discharged from Intermediary Care at womans to go home and be a family until they received the formal diagnoses and until she goes to be with Jesus.

There was a baby dedication that evening and close friends and family gathered around to support and love this amazing family.



That night she was taken off oxygen and it was thought that she would likely leave this world within 24 hrs. But, the truth is no one knows... no one.

That day they also received the results they had been waiting for. Elianna does in fact have Zellweger's Spectrum.


http://babyweston.weebly.com/zellweger-syndrome.html



http://corinnesophia.blogspot.ca/2011/12/what-is-zellweger-syndrome.html?m=1



That night another journey began.








She did not pass within that time and has been with us.

There is NO way of knowing how long that will be and there is NO way we can know what that might look like.







It has been wonderful to spend time, cuddling and bonding. But, it has been truly heart wrenching. They don't know for how long and in this time she has had seizures and the last couple days breathing issues called desats (where her blood oxygen levels fall and she loses her color).



Please know if they have not been in-touch or responded it is not personal. I know they appreciate SO MUCH all that people have done for them.

This time now is for them. To love one another and to be together.

So, we too wait and support when asked.








I will keep you posted once a week. Unless something changes.



God bless,

A loving Friend



And please read the links I posted about Zellweger's.