Wednesday, October 13, 2010
Well, this time traveling was an excellent happening for me. Normally there were two moments during the flight that always have been difficult for Dejana: when the plain gets up or down. The raising air pressure in the cabin is too unpleasant for her ears that she may cry or shout. But we found the solution! A hand full of raisons or several sugar free sweets do the trick. With this trick we can now land ‘successfully and "quiet", keeping the pressure on her ear under total control.
Eventually it ended in a good journey.
After a while we found our self's in the apartment of the hotel. We had two rooms, two bad-rooms and a small kitchen with an extra large terrace. All of it for us alone. This may only be a dream for the most tourists in the middle of the crowded high season. But I think that we deserved a dream holiday as we are en extraordinary family that carries the Rett syndrome in our baggage.
The holiday could finally start. It was summer, sunny and hot, just as I like it to be.
The most ideal place for all three of us was the large terrace. In this place we avoided the crowded beach and Dejana avoided the burning sun by laying halfway in the shadow. She could do this as long as she wanted. This time Dejana tolerated the sun much better and longer than ever before. She got a nice light brown color on her legs and back as they were exposed to sun but her arms and face stayed white as they were in the shadow all the time. Pity for this white parts! We would like so much that Dejana could get brown all over. It is very nice for me to see the brown color on the children along the beach. It belongs with the sun and summer. It is a sign of health to as I now realize. Children that are sick can't stay on the beach all day, they do not tolerate strong sun and they usually stay white all year long. It is something that I now know. Being outside, playing on the beach, swimming, jumping and getting color is the privilege of a good health. People with “usual-children” do not realize how happy they should be with this simple and ordinary things.
Anyway, we had enough sun on “our” terrace. And we had a therapy program for Dejana to. Because the hotel is a part of a spa we could do this program for three weeks. Dejana got a daily program that included manual massages, jacuzzi's, underwater massages and two times a day half an hour physiotherapy. And there was still plenty of time in betweens to rest, walk outside or to do whatever else.
We divided Dejana's therapeutic activities between the two of us. Her father took her to the massages and baths and I took her to the physio-sessions. I also went to swim with her later in the afternoon.
But now we are getting to the point of this story.
This time water was the extremely challenge for Dejana. And so, for us to.
Dejana likes to swim and we used to stay in the sea for more than an hour. Swimming and floating along the beach and looking at the children, who were playing with a ball or were jumping in the sea, is Dejana's favorite activity. We even had to laugh sometimes. So funny it was.
But.... the moments of getting in to the water and out of the water were not funny at all.
Dejana had Rett kind attacks called Vaslavas in almost all of this situations. Getting in & out of the sea, bath or pool caused big trouble for some reason.
And as it was a water holiday this happened all of the time.
We observed those moments very carefully and brainstormed about the problem from all sides, trying to find the reason for Vaslavas, but it was not that easy.
What we found is that getting in the water till the hips was not a problem at all. We could walk through the sea for an hour without any sign of an attack, but at the moment that Dejana got her upper body down the attack would start. I saw it as a raising pressure to her diaphragm and chest and gave provided a obstacle to the breathing. The Cranial nerves and the Brain stem again. Her father saw it as a strong reaction on the temperature changes between the air and the water. What it is we still do not know but we decided to work on the problem by repeating this kind of situations several times a week. That is our way of fighting the Rett syndrome. If there is a challenge do not avoid it but face it for as long as it becomes no challenge any more. Of course we will do this step by step in a controlled situation preventing Vaslavas and at the same time racing her sensory tolerance to such situation more and more.