Last half a year
The last six months have been busy. My little brother and I started to attend One Tree preschool regularly and for three days a week! We managed to stay away from illness quite well, except for the last month of the year. I even succeeded to stay healthy for the flu vaccination, and thanks to that, I did much better than Borik who had a really hard time coughing and breathing with a stuffy nose. Well, dad and Borik sometimes call at each other, Hey man, so when they have a cold, it is a serious man thing… In the beginning of the fall, we went to Belgium to meet with some doctors who assessed my condition in order to get the entrance data and see whether there is a clinical study for which I pass the criteria. Spinraza (Nusinersen) or Sunfish? In the end, we decided on Nusinersen. Honestly, I don’t have type two. For the first spinal injection, we should be going to Paris sometime in February, so keep your fingers crossed for us! But we might not even have to go to Paris witnessing the fast approval of Nusinersen by the FDA… After my examination in Liege, we went to the town where I was born, which is Oostende. It is beautifully wheelchair accessible, except for the beach where I couldn‘t get to with my wheelchair. I had my beloved fish soup in a restaurant there, and I showed them a drift or two.
I made up some exercises that we added to the workout dad does with me at home, so now the whole routine with stretching and coughing takes about 45 minutes twice a day. The first exercise is jumping from the table. I can turn over from my back to the side and jump down the table where dad catches me. The second exercise is balancing while sitting on my own, where I finish this exercise either by falling on my forehead on dad or on my back onto dad´s hands. The third exercise is rolling away from a rolled blanket, and the fourth one is lifting my heels. One heel is going well, but I still have to practice the other one because for that heel it is really hard. The cramps in my jaws got worse. We started acupuncture on the cheeks, massage from the outside and the inside, and stretches. I hate it so much but I still get a popsicle in my mouth when I’m done, and that is really important! We also increased the doses of my supplements because I gained weight.
On Christmas, Baby Jesus brought me a lot of money thanks to the HitHit crowdfunding project by Sportsmen to Heroes. I will use the money for a new cross-country power wheelchair and for the travels to Paris for the treatment. The cross-country wheelchair is great, but right now, I don´t have enough strength to control it. Therefore, I will need a more sensitive control system, which my technicians have already started working on :)
I had a cough and a high temperature over the holidays, but I got over it quite well even without any antibiotics. And it started to snow two days ago, so I am really excited! I got super warm leggings made of sheep wool from New Zealand from my uncle and a Sir Joseph goose feather jacket which I love, I am sooooo warm outside!
Sometime soon, we will start remodeling our bathroom so that it is accessible. Finally! Yipeee!!!
Thank you all very much for your contributions! Come visit to see what I do with them!
Wishing you good health and happiness in the new year 2017!
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