11-12-20

Yesterday Holden continued to sleep until the afternoon.  After sleeping for almost 48 hours, just waking up here and there, he woke and gave us some smiles and played for a few hours in the afternoon.  He wanted sit at the dining room table and play with toys and watch his iPad like he has always done.  He started to get tired again when he was sitting and fought so hard to stay there.  He tries very hard to do "normal" things.  He actually fell asleep at the table and that was it for the night.

He woke up this morning, was in a pretty good mood and stayed awake until 2pm.  His body is definitely tired and weak and moves around much slower than he used to.  We call these "good days" but that's a relative term.  It seems like we recalibrate what "good" means each day.  

4 comments

  • I will pray to God that your baby will grow , he will go to school , he will play golf we will fulfill his dreams, miracles happen everyday and there is no impossible with God. I will pray with him everyday.
    shane
  • Wishing Holden so many more good days. Poor little guys just wants to do what he loves to do 💔 hoping and praying he will get to do all the things he loves to do again soon 💙🎗🙏🏼

    Barbie Benton
  • We wish Holden and your family many “good days.” Holden’s a staple in our house and we are always doing our “Holden checks.” Thank you for sharing your story and reminding us to be a little bit more patient and love a little more when we feel like screaming and giving up. Holden, and your family are inspirations of strength. He’s such a sweet and silly boy and hope today he can play, eat, and giggle as much as he can!

    Jillian T maloff
  • We wish Holden and your family many “good days.”

    Jillian T maloff

Leave a comment