Sunday 11-22

Holden’s weekend ended much like it started, with a lot of sleeping.  When he is sleeping, he seems very peaceful and comfortable.  When he is awake, he has been irritable, restless and difficult to console.  There were a few exceptions and he had some silly moments.  This morning he called me a duck and gave me a big smile because he thought that was so funny.  It’s these little moments that keep us on the edge of our seats.  I have to say, the weekend was darkened quite a bit with the passing of Baby Tessa.  Neither Alex, nor I were expecting that news on Saturday morning.  Our thoughts and prayers have been with that sweet family.  

Holden is still insistent on us taking him to the table a few times a day so he can sit and feel some normalcy.  That’s been hard for us to watch, because he is so unsteady and we have to stay right next to him, worried that he might fall.  He usually only lasts for a few minutes but last night he stayed there for about 30 minutes eating his popsicles.  

Today I started decorating the outside for Christmas.  The last few years we have gone BIG with the exterior illumination, and by BIG, I mean super tacky!  Last year, our friends surprised us with the decorating when we were on a quick family trip right after Holden’s relapse.  This year I’m scaling back a bit, mainly because I don’t have the same motivation and energy as I have in the past.  Instead of decorating the front of the house, I’m putting everything in the backyard where Holden will be able to see it where he lays.  He hasn’t been excited yet about Christmas, but I’m hoping this display sparks some Christmas spirit for him.  I still have quite a bit to do before we light it up on Thanksgiving.  

Wristbands are coming tomorrow and we will be working to fill those orders.  Thanks to everyone for your support and patience in getting these out.  

The picture here was from Friday night. Holden didn’t really use a pacifier as a baby but he randomly asked for the two that have been floating around his room since he was a baby.  :)


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  • Holden is now a daily / nightly Routine for me. I cannot tell you how moved and how close I feel to your son and your family thank you so very very much for sharing this difficult time with us I pray for him & your family on a daily basis. Pray he is comfortable Look forward to seeing that perfect face every day.🥰🥰😇🙏🙏🙏

    Dawn Jessen

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