Friday, December 16, 2011


Today was the last day of school before Christmas break. Sarah had a packed day of holiday parties. Lots of sugar, sugar, and sugar! She was exhausted, but happy, when she finally hit the pillow. Sarah has had a great 4th grade so far! I can't remember her being happier in school ever before. She is very much looking forward to her 20 days (!) off from school though! Nothing like lazy days at home.

Jacob also completed his school year without a single sick day!!! Not a single one! Jacob and I got to go to Jacob's school Christmas party yesterday. It was wonderful to see Jacob have a Christmas party with his buddies. We watched Polar Express together on pillows, with blankets and teddy bears - all cuddled up in a big pile. We made Christmas pictures, and decorated cookies. Jacob picked the strawberry frosting over the chocolate frosting for his cookies, and only wanted red sprinkles on his cookies. It was then time for a little performance. With the help of his teacher, Jacob performed Jingle Bells with his hand made bell! It was too cute! The performance ended with Jacob giving me his Christmas gift he has worked on in class. It is now safely under the Christmas tree waiting to be open by all of us on Christmas Day. I am sure many of you have attended a class Christmas party or two. Maybe it didn't really stick in your memory, but for me, it was such a gift to see Jacob being able to end the school year, and participate in all activities with his friends! Please check out the photos when Jacob is going camping with his class as well! They are adorable. Jacob is all covered up in rug pieces and holding a flash light, so the bear won't find him! His friends were all concerned what would happen if the bear found Jacob :-

Jacob has started to pretty consistently shake his head when he doesn't want something! He has a harder time to nod his head, but if you feel his head and looks at his smiley face, you do know when he says yes! He has told us in the last week that he loves RED, that he is not into puzzles, that books with animal sounds are ok after all, that he doesn't want to hear "Itsy bitsy spider", but likes "the wheels on the bus"...I could go on and on, but I would bore you all!

Children's Hospital is very much part of our lives, but it is me going there on my own! Today, I went down there to listen to Dr. E perform on her violin with her chamber orchestra. It was amazing to see her in another element than as Jacob's doctor. What a chemistry between her and her husband when they are playing! She was so happy to see me and my friend Heather. She thanked me for coming, and I had to tell her that I had seen her this day for the last 3 years, so I couldn't break that tradition - this year only without Jacob. Jacob has been in the hospital this day for the last 3 years, last year in the ICU. She smiled, and again echoed Dr. C. - they both think that Jacob's brain is doing better than they thought with his recent progress.

Before I left Children's, I had to grab a bite to eat. As I was walking out of the cafeteria, I saw the whole Mito Clinic sitting at a table. Dr. C. asked me to come over, and I was told that the last testing done on Jacob's muscle and liver showed that there is now no doubt that Jacob has a Mitochondrial Disorder. Disease confirmed! In addition, it is clear that Jacob's Mitochondrial Disorder is due to a translation error of the mitochondria into protein. His metabolic doctor acted like a little boy having solved a very difficult puzzle! I couldn't help smiling looking at him. It doesn't change anything for Jacob, but it will help future research of Mitochondrial patients for sure.

And I am getting even more involved in Children's Hospital in the new year....I just got selected to be the Parent Chair on the Family Advisory Council at Children's Hospital. The Council is the place where different departments take issues and questions they need parent input to. I am excited to lead this effort in the new year! I am also going to join a group of doctors looking at how to best implement DNAs (Do Not Resuscitate) throughout the hospital. After the work is done, it will published and shared with other hospitals. That is a topic that is close to my heart, and I definitely have suggestions for improvement.

And Christmas is around the corner....and we're still at home. We're have done more Christmas gatherings and parties than I can remember in years. Jacob included. Next week, we're going to bake and get the last gifts ready, and just enjoy each other.

Much love,


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