Sunday, December 15, 2013


It's me. Mom is all wrapped up in the holiday spirit, so I will give you an update on how things are going.

I was doing great as I came home in time for Thanksgiving. After the holiday, we found out I came home on a too high dose of steroids. From one day to the next, my steroid dose was cut in half. All data proves that the new dose is the highest dose to prescribe. A higher dose won't make a difference. know me...I am always a little bit different. With my steroid dose cut in half, my ulcerative colitis was back in full swing!

I have become very tolerant to pain. There is not much truly bothering me including breaking a bone, believe it or not. There is a different story when it comes to my colitis. It hurts so badly. I seize due to the level of pain. I am afraid to go because it hurts. I often need to be catheterized, since I am afraid to pee. I get very lethargic. My GI doc moved my medications around, and he gave me a stronger pain medication than Tylenol. The pain medication has helped me a lot. No more seizures after my pain got under control. In the last couple of days, my stool output has also slowed down. My new dose of medication is kicking in. I am still not out of the woods, but I am feeling so much better tonight than a week ago.

Due to me being on steroids, my immune system is at an all time low. I avoid germs and sick kiddos wherever I can. Mom and dad have said no to me joining them to all Christmas parties this year. Mom and dad are like Clark Kent and Superman. They never show up together! You decide who is who :-

Bundled up for the Nutcracker!

This morning, mom decided to make an exception to me not being around other kids. She allowed me to go to Selina's Nutcracker performance. Yeah! Super yeah! The performance was within walking distance of our house. We packed up all my stuff, and took off in my stroller. I was sitting in the first row. Mom was excited with how well I was focusing on the dancers for the whole 90 minutes performance. It was amazing, and the best dancer of all was my friend Selina! She was one of the beautiful angels.

And this is where it is so hard. My parents want to keep me safe. I am still going to be on steroids until at least the end of February. We all sincerely want to celebrate the holidays at home. But at the same time, I need to be a kid! I need to live my life - germs or no germs, steroids or no steroids. So, we will carefully pick the times when I can get out of the house and still be medically safe. Who doesn't deserve to experience the beauty of the Nutcracker as a kid?

Love, Jacob.

P.S. I love that I get to practice volleyball with Sarah too! We're a good team:


  1. I'm so happy to see Jacob got to get out for such a special performance! He clearly was enjoying it! And he and Sarah are quite a team in everything!

    1. Thanks Deana! It was a special day for Jacob! I know you know what it means to have to make choices like this for your child. It breaks my heart that Jacob can't always just be a kid and be out with our children all year around, but at the same time, it makes days like yesterday very special! Love, Maria.