Happy 20th Marina!

Hello Friends,
Its weekend again.
Sammy had more visitors friends and family members. Hes seizures have been more frequent this week. He responds on music ,touch ,my voice with his eyes . Moving around has become more challenging lately. While holding him last night ,I realize that he is unable to move his hands on his own anymore. Its ,so sad to see this beautiful young boy suffering that much. I wonder ,that beside his body how much he knows ? I hope that at this point he is at piece with his sole and takes day at the time like, we do.I'm thankful that/ as weired as it sounds /because of Transplant treatment Sammy by passed one of most difficult stages -realization of drastic change for worst .
Helpless ,we just love him and cherish every minute spent together.
On the brighter side our older daughter turned 20 years old on Feb-17. She is home for weekend for collage . When she walks in and starts to play with Sammy -he recognizes her voice.
Today I wake up with one question on my mind how did we get to this point? Sammy's decline is obvious and progressing,what else can we do to help?
XOXO Sammy and Family