SMA Conference in the USA

05/07/2015 06:55

The journey to Kansas City

It all started at the airport near my Zbuzany, from where we set up for the long journey overseas to Kansas City. The flight was really long and my little brother, Borik, cried quite a bit over the Atlantic, when totally exhausted he was refusing to fall asleep. I behaved very well and that was because I knew that when we get there, I will get an ice-cream. The  cough, because of which my parents even thought about not going to the conference, is finally over, but I am getting a bit ahead. Firstly, we flew to Amsterdam, then Atlanta, where we had no idea that we are already not complete. We had two hours in Atlanta to change a flight, so we had to be quite fast. It was lucky it did not take very long at the Passport control. Nevertheless, we found out that one of our baggages is missing. It was the one with the clothes of me, Borik and my mom. So in a hurry to the plane, where they were awaiting us already. On the plane we found out that my special stuffing to the car-seat is gone and that I do not sit very well in it. My parents made some temporary adjustments and it works quite okay. After we landed in Kansas City, we went to get our rented car. We got a nice red one! Then we went to look for our appartment. It was not so easy and it was three in the morning local time when we got to beds, 10am at home.

The Conference

We woke up late in the morning and we found out that the appartment on the third floor of a wooden house is swaying a bit. Dad was making fun about it, luckily the house did not fall down while we were staying there. Borek was funny, he had quite troubles walking there because of the slanting floors. The first day dad went to the unofficial opening of the conference, held by a friend, Tim, in the local brewery. Supposedly, he went there to promote me. After we dropped him off at the beer, we went with Borik, my mom and aunt, Tonca, to have look around KC. In the morning my dad did not look fresh at all, I wonder what promotion he did of me:)

Fortunately, that day the conference was scheduled for the newly-diagnosed families, so we had quite enough time to get relaxed after the traveling of the previous day. In the evening there was a children party with the ralley of the researchers and the children in wheelchairs. I also raced and won in my Upsee! Towards the end of the evening it was quite difficult, I wanted to walk all the time, but it was probably too much in the end. I had to get some sugar quickly, of which there was plenty and quickly to bed. The night was terrible because everything was aching.

The next day mom and dad started to run around the conference rooms and search new information. I went with Borik and my aunt to the baby room, which was full of toys and children in wheelchairs. It was just great fun.

Just what I sensed, dad and mom found out quite a lot of new things. For example, I need a stander as soon as possible. Then I need a different seating system in my yellow guy (power wheelchair) and lot more. They also got new contacts for important people that could help us somehow. I had the feeling that we see each other just morning and evening.

The last day on Sunday it was better because we met with two SMA girls, Lauren and Claire, who are the daughters of dad´s friend, Tim. They are wonderful, I would love to be like them. Especially to have dogs like theirs. We visited them in the afternoon!

Road trip

We slep on Sunday in a different hotel and then on Monday we started our trip after buffalos and Native Americans! We had to drive 520miles in one day and that is a lot. We set out for the journey and went through the prairie, where buffalos and Native Americans ran around once, but we just saw cows and trucks!

In the evening we got to Limon, Colorado, where we had an accomodation arranged by an older couple, but we could not find it. Classic, our phone stopped working and we did not know the exact address. When we finally found it and were getting stuff out of the car. Mom put me on the seat with my car-seat and I fell straight on my head out of the car onto the concrete sidewalk! BANG and suddenly, mom and dad run to me... They thought that I am out. They kept examining me all the time and were making scenarios what we will do in the middle of the praire. In the end, it is very nice, big, but colorful bump. I already told them that another one on the other side would be good. I am enjoying it a lot, when they are increasing taking care of me;)

In the morning we started heading towards Denver, which is very nice. The best what we saw there was fountains at the station. From Denver we began to go increadibly up on the highway to the beautiful mountains. Dad was looking out of the window all the time and amazed what he is seeing.

Then we rested in Glenwood Springs at our friend, Bob. We visited children at the local preschool, where they had many gorgeous things. I loved the water table the most, it was full of water. Then dad had to see a dentist because cleaning his teeth, one fell out or something like that ... The dentist made some temporary fixing and he did it for free! He was so nice! At night, we went to a wild concert at the confluence of the Colorado river and the Roring Fork. It was great because we danced a lot! I not only danced but also observed the people around me. There was everyone there: babies, kids, adults, grandfathers and grandmothers. It was a great day today and the cough is almost gone! We were staying at the altitude of 2000 meters, you know, and my saturation is around 97% !!!! Wonderful, right?!

We are not really managing to take pictures, we are trying to film. Borek ate one SD card, so we will see whether we get some of the data out of it. In any case, some pictures are here.

We went through Utah and now we are relaxing in a wonderful house on the very riverbank of the Salmon River in Idaho. I will tell you more about our latest travels and adventures next time.