Thursday, February 28, 2013


It's me. I thought it is about time for me to give a little update! I have some exciting news to share.

I have been working hard with my speech therapist over the last couple of months. When she started working with me in December, she told us that her goal was to give me a way to communicate independently. It was a big goal for me, but very exciting! I have been hard at work. I don't know how many different communication buttons I have tried - big, small, sensitive to touch, less sensitive to touch, buttons attached to my foot, buttons attached to my wheel chair tray, buttons in my hand. I have tried different talkers, and many cool toys that I can activate all by myself with the help of a button. I have learned to turn on and off the radio, and I can't wait until I am in charge of the TV!

This week, I think we took a few steps closer to what I might need. I have met with two people who specializes in "assistive technology". They are helping kids like me find the right equipment to communicate. I think we finally might have found the "perfect" button! We are now exploring two possible communication devices, and how I best can communicate what I want and need. Everyone in the house is fascinated how much these talkers can help me!

My favorite thing right now is not talking. My favorite thing is playing! I have a couple of games on my IPad that I can play with my communication button. I love racing cars! I even beat sis last night! So much fun (especially beating sis)! Sarah is slowly getting used to my talker. She has been a little impatient with me as I am still trying to learn how to use it. I just get so excited, and just want to press the button over and over again!!! Mom can be impatient as probably you all know :- This time, we both know that it will take some time to fully figure out what I need, but we're on an exciting journey together!

I also want to let you all know that after three years of absolutely no standing, I am now standing for 30 minutes in my stander every day! Look how tall I am! You can see that I am starting to catch up with sis!

I also started school again. My teacher is coming to my home, since I can't be around kids this winter. I worked on colors with my teacher this week, and I also got to play a little bit in between. I still miss my friends in school, and I can't wait to go back to school in the spring again. At least  my friend Selina is soon back from Europe. I can't wait to show her all my new toys!


I have been doing pretty well lately. I had a cold last weekend, and felt pretty lousy, but believe it or not, I was able to fight it from home. It was a weird feeling being home, and being sick. Mom and I got to catch up on reading, watching movies, and relaxing together. We both enjoyed it very much. My potassium is still low, and makes for more blood draws in the last couple of months than I can even count to. I just hope we can find a solution, since it is not good for my heart. It also makes my mom worried.

On March 19th, I do have to go to Children's and get new ear tubes. I have a severely retracted ear drum, and it can only be fixed with ear tubes. First everyone thought I had cholesteatoma, which is a cyst in your ear. It would have required multiple surgeries, so we're happy that was ruled out! Everyone is still a bit nervous to have me go through a surgery, even if the surgery is only 5 minutes. It is my breathing, and the fact that my blood is not coagulating as well as it should that makes everyone nervous. I will go straight to the PICU right after my surgery, and stay there for the night.

And here is my beautiful sister right before going to her school ball with daddy! Isn't she pretty?


Til next time,



  1. Jacob, you and Max are sharing lots of people these days! We will have to start passing notes along with them!

    I'm so happy you've found a switch that is working, and you'll have to let me know what games you have found!

    1. Yes, they are sharing some good people these days!