A very late fall update

08/01/2016 23:16

I am terribly sorry for not writing anything for such a long time, but the fall was quite a demanding season. In September I started to go to my preschool again,but in a few weeks the viruses took over. In the following months I had some typical children’s viral diseases that fortunately lasted just a couple of days, but then unfortunatelya cough came along. With the cough assist I manage very well, and luckily, we did not have to go to hospital. However, after about three weeks, it started to tire me a lot, and thus, I got antibiotics. It helped, but the cough keeps coming back. Now, finally, it started to freeze, there is snow, which is beautiful, and I am hoping it will kill all the germs.

In September I celebrated my third birthday! I am a big girl now, you know. I didn´t want any birthday party, but I still had three birthday cakes. I love blowing out candles. Mom and dad did not know what to give me, so they got me a Vietnamese pig that I fell in love with when we were visiting one farm. Her name is Peppa, and she will be my assistance pig. She is learning quickly. She does not live with us, she has her own pigsty but we take her home almost every day to play with us. We also go for walks together. She got used to her harness very quickly.

I started singing in a choir where my aunt, Tonca, also sings. We are called Broučci (Little Beetles).

Many great things have happened in the past few months. Thank you all for the donations you made because these great things would have not been possible without you. There have been several events, such as the collection at the Lipno races, limited edition labels at the Susice brewery, Author Prague 50 and others, where money was raised for me! Thank you!!! The wheelchair elevator is built!!! Now I go out in my wheelchair all the time. Everything is so much easier, mom says. I just get dressed and straight to the wheelchair and off I go.

We have a big new car, too!!! It is green, we call it the frog. I ride in the front seat and see everything. Mom is a bit nervous because the car is huge and whether she will find a parking spot, but we always do. We sold our Scout that mom and dad got as a wedding gift, oh well, I could not see much out of it anyway, it was so much shorter. Our frog still needs to be made wheelchair accessible.

I have a new mattress and pillow. It is made of a kind of memory foam, and it is really comfortable. Dad sometimes falls asleep next to me because he says it is so much more comfy than his bed.

In October, the seating system in my wheelchair was rebuilt, at last, and it is almost perfect now. SMA people do not use the fixation orthosis, it is no good.Dad still makes some adjustments so that the armrests are higher and I can better reach the joystick, and he also adds some pads for me to sit up straight. The best thing, though, is that they reprogrammed the software, and I can ride it on the fastest possible speed now, which is much faster than before. Dad and mom have to run to catch up tome.

The next project is the bathroom. I am growing and getting heavier, which is really good, but mom needs to start some training because it is beginning to be quite difficult for her to wash me. I am very much looking forward to a new wash-basin, which I will be able to get to in my wheelchair and brush my teeth and wash my hands. I cannot really get close enough to the one we have now. I hope it will not take such a long time, as did the construction of the elevator.

We are still waiting for the stander and we are thinking about BiPAP that would help me at night. In December we spent one BiPAP trial night in hospital to try the settings, and it was quiet good. Now we are waiting for the review of our insurance company.

Check the photo gallery!