Thursday, November 22, 2012


I am back! I have had a couple of rough months, but I am starting to feel better. Sincere thanks to all of you who have been cheering on me. I appreciate you all very much, and you help me through the toughest of times!

Yesterday I got the best surprise that anyone can imagine. My best friend Selina and her sister Leandra came to visit me! We had so much fun together. I got many drawings from both of them, and also a mobile with glass dolphins! It is nicely decorating my IV pole. I love this drawing of Selina and me riding a turtle!

We got some crafts from the play room, and started to play. We painted ceramics. I only wanted to do the same colors as Selina. We then made several drawings for each other. We had fun with the mermaid potato head, and we took turns putting the potato head together. The whole time, my EEG was running! I sure hope they had fun watching us play, since we were on camera the whole time! Selina and Leandra didn't care a bit that my head was wrapped in this white turban. I felt so good about playing, and simply see my friends again. I have already negotiated with sis that she will lend me her barbies and in return she get to use my IPad. I need them for my next play date in the hospital!


Today, I had a really good Thanksgiving with my family! They all brought Thanksgiving to me. Dad and I watched Macy's Thanksgiving Day Parade on TV while mom and Sarah cooked at home. They got the turkey in the oven when they woke up, and then made some side dishes to go with the turkey. The pumpkin pie they made last night. Mom loves that sis is getting into cooking, and she is good at it.


I always love when sis is visiting with me. Today was the first time in a month that I got to get out of bed! I loved being up in my wheel chair again. Sis and I had craft time together. We made a drawing of a turkey for the nurses! Sis then asked my nurse, if she could take me for a spin around the hospital. They said yes! This is a big deal, since I am always in isolation, which means I am not allowed to leave my room. The reason I am in isolation is not that I am contagious to other kids, but because my immune system is so low. It is better if I don't leave the room and that everyone entering my room is always gowning up. I sure don't need any extra germs! Mom and dad agreed that today was a good day for a ride around the hospital, since most kids have gone home for the holiday. The hospital is always deserted on holidays.

So, for the first time in 6,5 years I got to go to all the cool places!


 We also had some special visitors today. Teresa and Stacey came to see me. They gave me a huge giraffe! I named him Axel. Teresa and Matt spent Thanksgiving in the PICU with their sick baby Axel last year. Sadly, Axel passed away a few days after Thanksgiving from Mitochondrial Disease. His parents and aunt Stacey visited the PICU today, and gave out baskets and flowers to families spending this holiday in the PICU. What a neat thing to do in the memory of Axel. We also got a goody basket. Sarah loves surprises like that, and I love my giraffe Axel!

Mom says I also need to let you know how I am doing. They started me on steroids yesterday because my stool hadn't improved as much as they were hoping on my current medications. It seems to be helping. Cross your fingers & toes! I went 16 hours without needing to go, and today I have only gone 1 (!) time to the bathroom. If things continue to improve, I can hopefully start eating again in a couple of days. Please, please, send positive thoughts and vibes that the steroids will work, so I can get home in time for the holidays! I also had an EEG yesterday to see if my subclinical seizures had changed. I have now been on this experimental mitochondrial drug for a week, but unfortunately the EEG was unchanged. My brain is still buzzing away! Dr. C. says that we should not be disencouraged, since I have only been on the medication for a week, and we don't know how well I am absorbing the medication right now with all my stool output.

I am leaving you with a picture of mom & me. She is hanging out with me tonight. I have no intention of going to bed...I simply feel too good tonight for sleeping :-

Happy Thanksgiving everyone,



  1. What a fun day you had yesterday, Jacob!!!! You are so precious!! So happy to see you feeling better! We keep you in our prayers and rejoice on your good days! Take care, little buddy!!

    1. Krissy, thank you so much! We're going up on full dose of epi this coming week. We haven't seen as great results yet, but the fear is with all this diarrhea that Jacob is not absorbing the medication as well as we would like...One day at a time :-