Sunday, May 13, 2012


It's me. Life is slowly going back to it's old routine. We're done with my IV antibiotics, and I feel pretty good again! Everyone around me is getting used to using this cool lumbar support that helps to keep my arms in place as I am getting transferred. We also have a hoyer lift on board that will help with transfers, but as everyone has already told us, it takes a lot of time to get the lift ready to use, so it will probably be used more if I am ever casted again or as I get older. The next big thing is to find the right handicap van for me. Mom and dad are hoping to make the big purchase in the coming month. I'll let you know when I am cruising down in our new van :-

It is National Nurses' Week, and I have my two favorite ladies back in my house again! Gemma and Libby started working again on Monday! I am so happy! They were both busy getting used with the on-line charting this week, so I am happy they know all my ins and outs! I have been sleeping really well at night knowing Libby is watching over me. I have started to wake up with the sun, so I am often starting my day around 5-5:30 am right now. Mom and dad are telling me that it's ok to sleep in, but I haven't listened to them :- Gemma and I have been busy working on cards for my teachers and therapists, since it was also teacher appreciation week. I have made a card for grandpa, and look what Sis and I made for mommy with the help of Gemma:

We sure surprised her with this gift on Mother's Day! My mom got spoiled this morning. Sarah, daddy, and grandpa took her to brunch at the Dazzle. I stayed back home with Gemma, since I knew it would be quite a crowd out today! Mom told me that it was one of the best brunches she has eaten in Denver. Live jazz  music made it even better for her! This afternoon, we have taken it easy at home. We have read books together, and just relaxed. That is always one of my mom's favorite things to do on Mother's day - to simply slow down a bit.

Did I tell you that grampie came to visit too? He arrived on Friday night! Everyone is excited to have him visit while daddy is going to Poland for work. Grampie will help mommy take care of us kiddos. I think it is just an excuse :- We just wanted him to come and visit!!!

Yesterday, it was time for my photo shoot. I had been asked to participate in in Children's Hospital's 2013 Calendar. We all went off to a fancy photo studio. There I got to meet Arthur! He is a service dog at the hospital. He goes around and plays with the sick kiddos. I was excited to meet Arthur, since I don't get to see dogs in the hospital, since I am always in isolation while in the hospital. That means no doggies get to visit with me. Arthur and I didn't cooperate too well at first. It was hard for us to be patient, and get into a perfect position at the same time :- I was getting tired from sitting up on a very slippery white leather chair, and Arthur didn't think it was that fun either! In the end, we ended up on a bed together, and the photographer was happy with the photos she took. Since we were all out and about, we decided to stay outside. We ventured out for some shopping and ice cream despite a pretty chilly spring day! We ended the day with a big birthday dinner for daddy! Grampie, Sarah and mommie cooked while daddy and I watched golf on the TV. That worked out well for all of us.

We have heard back a little bit more about my newly discovered gene! Mom met with the genetics team this week. They are hoping to invite us all down to the hospital to present their full findings in a few months. In the meantime, Sarah delivered her DNA by spitting in a little tube. She is the one who will confirm their findings by having one or no copy of the bad gene. Their hope by finding this gene is that they can now test other patients who also have this disease. They are sure that it will be more cases than mine. When they have a population of patients, they can also start thinking about treatments and medications. We know that all takes time, but it is cool to be part of helping others! They are also going to inject a healthy gene into my DNA to see what happens. We also found out that my mom and dad simply happen to have the same bad copy of this gene. In the past, it had been speculation if they were related hundreds and hundreds years ago. By studying my mom and dad's DNA it is clear that it is a pure coincidence. Who would have known?!

Life is slowly going back to normal. We're working with my therapists to make sure they are comfortable with my new diagnosis of osteoporosis. Tomorrow I get to go into the warm water pool again! That hasn't happened for a very long time, so I am excited. I am also finishing up school this week! We have an end of school year party on Thursday that I am very much looking forward to!

Much love to all moms and nurses out there! You are simply the BEST!

Love from Jacob.


  1. A great update Jacob!! I'm glad you are home with your family, and your great nurses!!!

    1. We're very happy to be home! You learn how to appreciate simply being home.

  2. What a great post! I am so happy you guys are all well and are having fun! We think of you guys all the time and Selina will be so happy when you come back to school tomorrow. She will finally be able to give you the drawing she made for you. Much love to all of you!

    1. Jacob loved being back in school today! We will definitely try to make Selina's dance recital!