Saturday, August 25, 2012


It's me. I have been too busy this summer to chime in on mommy's blog. I have had a really great summer! It was definitely a hot one. There were weeks when I couldn't be outside much, either because of the smoke from wild fires or from the simple heat. My body is not good about controlling my body temperature when the air temperature goes above 85-90 F, and did I mention that I also don't sweat!

The pool is my favorite place as many of you know! The same goes for this summer. I had many great days at the pool. I also had a couple of play dates at the pool with my best friend Selina. They were always special times! My Swedish neighbor Camilla and her kids also took good care of me at the pool. They always made sure mom got a little break as they took me around the

And this was at my friend Selina's birthday party!

In June, my second cousin Tilde and a friend of hers visited us for a weekend! Sarah had a blast with the girls. I also got to hang out with them as you can see! It was a good weekend for us all.

For 4th of July, we decided to all go up to Breckenridge for the day. We wanted to try out my new awesome handicap van, and also see how I would handle the altitude. I hadn't been up for two years due to me seizing on and off for 24 hours the last time we attempted a vacation up there. Unfortunately the same thing happened this time again...I just got so sick from the altitude, and started to seize. I still got to take a dip in the pool, and hang out with my family, but I think I won't get to see the mountains for a while...


In July, mom and I stayed back home as Sarah and daddy went to Sweden. They had a fabulous time visiting with family and friends. For me, I had my mom all to myself, which was awesome! We had some special times together.

In August, my aunt Hanna came to visit all the way from Norway. She brought a friend as well. They loved my hair! They kept massaging my head, which I very much enjoyed. They also made sure to get some shopping and touristing in! I love when my house is full of people.

On the medical front, I did sneak in a stay at Children's Hospital in June. I had a nasty respiratory virus and pseudomonas. I was treated aggressively with IV antibiotics in the PICU, but was happy it wasn't pneumonia this time around. We have continued to work very closely with Dr. C. all summer long. We are now trying to wean me off my core seizure medications. It is not as easy as it was with some of my other seizure medications, but we're trying very hard. I have also continued to get bone injections for my brittle bones. Mom was nervous about my first outpatient injection, but I did awesome! I have gotten a hard shell (TLSO), which is supporting my T4 wedge fracture. I love the support it gives me to sit up! In a week, I am also getting a stander, so I can start doing some weight bearing again!

And on Tuesday, I start kindergarten! I am so super excited! I am going to go to two schools this year. I will continue at Bal Swan with Mrs. Cristy! We are a class of seven boys! My mom love the small class room size as I am sure some of you have picked up on :- I am also going to start in an elementary school once a week, and see if I can stay healthy in a regular class room. Mom has already fallen in love with my kindergarten teacher, and so has Sarah! I can't believe they both have been visiting with her several times without me! Mom is extremely happy with how my school has accomodated every single request she has had for me. I reminded her that she has been working with this school for 2 years before she finally decided to send me, but it seems like everybody is now super excited to have me start - including myself! The one thing that still scares the school is my 4 seizure action plans. Schools typically call 911 for a seizure over 5 minutes. We do it a bit different. We keep me home for quite a bit longer before that 911 call happens...the reason being that we would otherwise call ambulances right and left. It really didn't make the school nurse too comfortable, so my seizure action plans are now going up to the top of the school district to be reviewed! Mom and dad smiled a little when they heard that.

So, I am enjoying the last days of summer as you can see! This photo is from today. And I can't wait for Tuesday to come around, and for school to start!

Much love,


  1. Good luck at school! Dermot has one more week of summer left! Nice Tlso too, hope it helps!

    1. Good luck with Dermot's school start too!

  2. awww! We miss you Jacob! Have a great start in school, makes us miss Bal Swan even more. Selina will be starting on tuesday too. Have fun!!! I'll be seeing your Mama on thursday. (-;

    1. I will miss you SO much in the classroom tomorrow, Selina!!! I will have my mom talk to your mom about getting us together when they have their wine and fondue on Thursday! Much love, Jacob.

  3. Love your summer update Jacob!! Always praying for you -- Have a great time in kindergarten!! Love, Linda

    1. Thanks Linda!!! I hope you had a great summer too!