♥ HARLEY JANE ♥
My lil Grandbaby was born May 14, 2009 with a very scary and unknown diagnosis of hydranencephaly. Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with fluid. There is no standard treatment for hydranencephaly.
Harley Jane was born with only 10% of her brain. Basically all she has is her brain stem at the base of her skull. A one in a million chance of that happening, the doctors told us. After 4 days in the hospital and the doctors giving her no hope to live past a week, Kayla and Adam decided to go against doctors orders and take Harley out of the hospital. Our thoughts were if she only has that long to be with us, she is going home so we can smother her with love and attention till that day comes... The next day they took the feeding tube out of her nose. And decided that they will feed her whenever she is hungry and love her ALL THE TIME . hehe, must be nice! LOL Well, here we are at 37 days!! And Harley is doing GREAT! She has proven all the doctors WRONG!
I am trying to stay positive and learn as much information as possible to help my grandbaby. I have read so much information and have made many new 'internet' friends that are giving me so much advice and support. I thank all of you. You are all truly angels!!! ♥
I am going to try to keep up on this blog so that I can document Harley's Journey through life and also my journey to understanding and living with Harley Jane's condition.
I still believe that everything happens for a reason.
I still believe that LOVE conquers all obstacles.
I still believe in staying positive and being optimistic!
I love her like I have loved no other!! (besides my two sons! ♥)
I love to just hold her for hours. I love to look into her big, blue eyes and her beautiful lil face. I love to rock her back and forth and I love to hear her cry! (even tho my son hates it) Because it makes me feel good that she is capable of doing so!
So, back to the journey.....
Stay tuned for Harley Jane, the miracle baby!!!!
♥
Harley Jane was born with only 10% of her brain. Basically all she has is her brain stem at the base of her skull. A one in a million chance of that happening, the doctors told us. After 4 days in the hospital and the doctors giving her no hope to live past a week, Kayla and Adam decided to go against doctors orders and take Harley out of the hospital. Our thoughts were if she only has that long to be with us, she is going home so we can smother her with love and attention till that day comes... The next day they took the feeding tube out of her nose. And decided that they will feed her whenever she is hungry and love her ALL THE TIME . hehe, must be nice! LOL Well, here we are at 37 days!! And Harley is doing GREAT! She has proven all the doctors WRONG!
I am trying to stay positive and learn as much information as possible to help my grandbaby. I have read so much information and have made many new 'internet' friends that are giving me so much advice and support. I thank all of you. You are all truly angels!!! ♥
I am going to try to keep up on this blog so that I can document Harley's Journey through life and also my journey to understanding and living with Harley Jane's condition.
I still believe that everything happens for a reason.
I still believe that LOVE conquers all obstacles.
I still believe in staying positive and being optimistic!
I love her like I have loved no other!! (besides my two sons! ♥)
I love to just hold her for hours. I love to look into her big, blue eyes and her beautiful lil face. I love to rock her back and forth and I love to hear her cry! (even tho my son hates it) Because it makes me feel good that she is capable of doing so!
So, back to the journey.....
Stay tuned for Harley Jane, the miracle baby!!!!
♥
