Wednesday, November 26, 2014


We made it home in time for the holidays! Saturday evening, I didn't really have a good sense of how long it would take for Jacob to come home. We got lucky this time. The attending took care of Jacob in March this year, so he knew how Jacob's colitis get completely out of control. Rather than waiting to see how Jacob's colitis would progress, he decided to be aggressive. We know what the magical number of Prednisone is to stop colitis, and the first dose was in before noon Sunday morning. Jacob was once again back on antibiotics for his tummy. We were told to let the team know when we felt comfortable to manage his colitis from home. We decided to monitor Jacob in the hospital Sunday, and by the afternoon Joakim and I both felt we could manage this from home. It took a few strings to pull, but we were home in time for Jacob's bed time. It was a cold evening, and when it was time to hit the road, Jacob's handicap van wouldn't start. Battery was completely dead after not being used for 11 days...Luckily, the security guard was able to help us jump start the car, and we headed home!

Monday, Jacob gave us a scare. The boy who never sleeps decided to take a 7 hours long nap!Nothing could get him to wake up despite transfers around the house, vest treatments, and deep suctioning. With how lethargic Jacob had been in the hospital, a thousand thoughts raced through my head. We checked his vitals, kept Jacob warm, and checked his glucose. We were starting to debate if Jacob had to go back to Children's after all...Little did we know, Jacob was simply catching up on sleep after not sleeping well for 11 days. After sleeping all day, he decided to party all night. Honestly, that made me very happy. Our boy sure knew he was home again!

Jacob is definitely still weak, so we are planning on a quiet Thanksgiving at home. It is just what our family needs right now, and we are very grateful to all be home.

I want to once again thank our community for your love, support and encouraging words. I wrote at one point that we never feel alone on this journey. It is so true today, but it hasn't always been the case. I think back on our first hospital stays during Jacob's first year, and I think hardly anyone knew what we went through outside of our immediate family and a few close friends. Over the years, our community has grown and we treasure every visit, every hug, every phone call, every message, every gesture of kindness. So in time for Thanksgiving, I want to simply say thanks.

Lots of love,

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