Sunday, December 23, 2012


It's me. I just wanted to wish everyone a very Merry Christmas!

It has been busy around here. The holiday preparation has been going on, and I think my mom has broken a record in number of cookies and treats she has baked this year! I helped baking Swedish saffron buns, and chocolate dipped Marzipan candy yesterday. I love when our kitchen is in complete chaos, and I am right in the middle of everything!

On Christmas Eve, our family celebrates Swedish Christmas. We have invited two dear Swedish families to share in our Swedish julbord (dinner). Mom and dad are busy preparing Swedish Christmas dishes. They are telling me this has gotten so much easier with IKEA in town. So, tomorrow it is all about our family's Swedish traditions. On Christmas Day, we shift gear to our adopted American traditions. We will have a big Christmas breakfast and open gifts together. I love that we can do both!

Santa has delivered some gifts to me early this year! I have gotten two new bean bags! I especially like my very big bean bag! Three people can fit in it! Here I am snuggling with sis.

Apart from all Christmas fun, I think it is time for a tummy update! I got to see my GI doctor this week. He is now sure that I developed ulcerative colitis or IBD (Inflammatory Bowel Disesase) because of my mom's genes. It has nothing to do with my mitochondrial disease. This conclusion comes after we now know that both my great grand pa and my aunt have the exact disease I have. It is an auto immune disease that I have lived with without showing symptoms earlier. Most likely, I caught a virus in the hospital that "triggered" the symptoms of colitis/IBD. Everyone is extremely happy that my colitis is in remission. I have basically no symptoms right now. It makes for a very happy me! We will continue to wean me off the medications that I was started on in the hospital with the hope being that I only need one medication to stay in remission. My doc especially wants to get me off my steroids, since I already have such a weak immune system. I also got to find out that GI is very much like neurology. It will be trial and error to find out what medications will work for me, and we have no idea when my disease will flare up again. Maybe just knowing that it is likely it can happen again.

Also, mom and sis came down with a GI bug on Friday. They were both out of commission. Mom knew that if I got it, it would be a free ticket to Children's for me. Miraculously, I didn't get it despite mom and Sarah always being all over me! We're thinking that we might be starting to see positive effects from my new mitochondrial drug, since this is one of the things that has been reported by other families. We Mito kids just don't get as sick when we're on epi!

Lastly, seizures are at bay. My clinical seizures are controlled. We have not used rescue seizure medications since we came home. This is the best Christmas gift in our home.

Merry Christmas to you all!




  1. Happy Christmas to you Jacob!!! Hooray for being home to enjoy it all!

    1. Thanks Deana! The same to you and your family!

  2. Merry Christmas to you Jacob and your whole family!!! We love you to pieces and are SO VERY HAPPY you are doing so well! Selina sure can not wait to see you and share some christmas cheer with you. Much love to the whole family!

    1. Merry Christmas to you all too! I hope you all had a great Christmas! We can't wait to get together either. Let's just make sure we all get healthy first!