Tuesday, September 4, 2012


It’s me again. I have conquered my first week of Kindergarten! My mom was regretting for a bit that I am going to two schools when she realized that she had to do everything twice to get me ready for school. Two school supply lists to fill, two meetings with my teachers, two meetings with the school nurses, two health care plans to create, two bags to get ready with all my medical supplies etc. etc.  The list is long, but we did get it all ready in time. No big deal, mom!
1st day at Kindergarten:
I started out going to Bal Swan kindergarten. This is a familiar place for me as you all know. I already knew Mrs. Cristy from last year, and I already like Mrs. Margo a lot. My class is small, only 7 kids including myself, and be ready for this - only boys!!! I made two friends, William and Sam, on my first day. They were already giving me choices, and helped me out. I also have nurse Gemma come with me, so she is always making sure that I am doing ok. But oh boy, it is tiring to be back at school! After two hours, I fell into deep sleep. Nothing could wake me up…I am hoping as the year goes by that I will have more energy. I also had physical therapy right before school, so what did they all expect? The Director of Education Mrs. Patti loved my mom blogging about the school painting “He’s not heavy – he’s my brother”, so I went home on the first day of school with that painting. We’re going to hang it in my room now. It will be perfect. That was a very nice gift to receive on the first day of school.
Here is me after 2 hours of school:

On Friday, I was going to start at Coyote Ridge, my elementary school. I was excited to start a new school, but before we left we got a call that there was a boy in the morning class who had been throwing up. I knew that meant I wasn’t allowed to go…but my team at Coyote Ridge had an alternative plan. I would still go to school, but not be in my kindergarten classroom. So, my first day of school I was instead hanging out with Mrs. Chandra, my special education teacher, Mrs. Katie, my new speech therapist, and Mrs. Peggy, my new occupational therapist. It was cool to have them work with me on drawing and writing. I am getting pretty good at holding my pen by myself! I also got to try out some new communication devices, and I got a bit annoyed that I had to tell them over and over again that I love Spiderman!!!  They love when I show them consistently what I like, I guess.

Mom is very impressed with both schools, and that they keep her informed on any illnesses going around in the schools and especially in my classroom. We got calls from both schools right away, and that makes it easier for us to keep myself healthy and to work with Dr. E. on when to send and not send me to school.
Sis is finally starting school on Tuesday! She is ready (and so is mom), and I think it is about time Sis gets back in business :- She has had a really great summer. Mom and dad took their first vacation in 10 years without us kids this weekend. They went to Scottsdale, Arizona, for 3 days. Apparently, mom didn’t do anything but relax! Dad relaxed a lot too, but also sneaked in 36 holes of golfs. He was happy! I am thrilled they got to go away. Sis and I had a blast!  I spent time with my favorite nurses Gemma, Libby, Sarah, and Betsy. That was all fun. Gemma even took me swimming. Sis got spoiled rotten by our friend Gail from morning til evening…I am just saying…

I am excited for my 2nd week of school starting up. Unfortunately I will miss school on Tuesday. I am getting enrolled in a clinical trial at Children’s. They are going to study my liver in detail, since they think there might be more clues from my liver biopsy than they have been able to understand so far. This is a 5-year study, and mom and dad will be poked in addition to me. More on that to follow…

Much love,


  1. We are so happy you had a great first week Jacob! I'll be showing Selina the pictures tomorrow. We are so glad everything is going so well! Much love! And I love the fact that Mamma didn't do anything for 3 days! Way to go! (-;

  2. I have told my mom I want to see Selina! I am typically free on Wednesdays! Love, Jacob.