Wednesday, February 23, 2011


It's me again. Mom is just too busy with work and mito non-profit stuff these days, so no time to blog...Since I am doing pretty well this winter, I might simply have to take over from her!
As a mysterious Mito kid, my blood, muscle tissue and liver tissue have been sent to labs all over the world to figure me out. The guy who actually diagnosed me lives in Australia, and is one of the gurus in the Mito field.
On Friday, I did join my first clinical trial. It is a clinical trial without any risks involved, but a very important one. I am going to help the FDA to approve the first pediatric BiPAP mask in the US! It is so needed. We are many kids using a CPAP or BiPAP machine today, often due to sleep apnea, and the adult masks (even extra small) are way too big for our little faces.
Mom got to sign a huge stack of paper for me to join the study. I then got fitted with my new BiPAP machine and mask. It is SO tiny! I don't like the picture of me in the mask, but I just want to show you that you can actually see my face with this mask on! With the mask I use now, I have a hard time opening my eyes, since it is covering my whole face.
I am going to use the machine and mask for 13 nights. I am then going in to the Children's Hospital for a sleep study over night using my new mask. It is a piece of cake, since I do a couple of those a year, so I consider myself a pro in this area. Mom and Sarah typically get a movie night to themselves, and daddy and I hang out in the sleep lab.
After the sleep study, I will use the mask for a couple of more weeks, and they will record my results. I already now know that it will be much better, but we will go through the necessary paperwork.
They are hoping to get FDA approval within a year! That should also put a stop to the doctors and respiratory therapists smuggling pediatric masks from Europe. They told me they visit the hospitals in Europe, and always smuggle a couple of masks back to kids at Children's in order for us to breathe better at night. That is so kind, but what a big step, if a right fitted mask was simply available any time you need one, rather than knowing the right smuggling doc?
Love, Jacob.

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