Sunday, May 3, 2009

From May 1st

We met with the doctors today and they are pretty sure she has Alpers Syndrome. It means she has abnormal mitochondria (part of all cells that makes energy) which caused her to have the seizures and may also affect her liver. It's fatal and she will most likely die from this. The neurologist said it can take anywhere from a few months to a few years, just depends on her. Children are mysteries, though, so keep praying for a miracle, because they do happen.Also, they are talking about removing her feeding tube and putting in a GJ tube. That will be a tube that goes from outside her stomach to her intestines to feed her. That's more permanent than the feeding tube and will cause less problems.She also has a UTI and an infected PIC line (like an IV) in her arm. She's getting antibiotics for both and the PIC line was just removed. They'll probably put in a central line in place of the PIC.When all this is said and done we'll talk about either bringing her home or moving her to a group home. I'll let you know more as I find out. Thank you all for your love and support, we all really do appreciate it.


  1. Will be praying for you and Harley and your family! My heart goes out to you!

  2. Harley is in our families prayers. My MIL's whole church is praying for her.