29 mars 2009

Jag har lärt mig något nytt!

Har varit måttligt intresserad av den här tidigare men sedan ett litet tag tillbaka så har jag varit mera aktiv med mina händer.

28 mars 2009

What did I really do in US!?

To make a long story short:

Well, Monday was the start.
At 10.00 I had an appointment with Dr Weidig, an eyedoctor.
Before, we'd got driving directions from the Institute, the only problem, we had no car!
So we ordered a cab and a nice black man named Alan picked us up. He didn’t know either where the place was, so 32$ later we arrived after som police help, just in time! Dr Weidig examined my eyes and saw that I looked with my left one and that my right one was just keaping up. He said that my right eye doesn't have enough veins to support it with oxygen. The solution to this is MORE OXYGEN, a lot more!
He also said that I have outline perception but he did not think I am able to see details yet.
I don’t know what he saw but I did my best not to see, I was really upset and starved.
After the examination, out in the entrance we met another couple from the Institute. You get quite stoned when you meet someone you know, in an eyeclinic in Philadelphia. It was fun :-). After some chitchat Alan picked us up again, this time he drove us back to the Institute for 14$! While he drove us back I drank a whole bottle of fruit to calm my stomach.

Back at the Institute we signed in with Emma, the coordinator. I got my nameplate on my back, you know.
We saw some familiar faces, some "friends" from our last visits. It was really nice to hear about their progresses.

First out was Ellíani, who measured me all over, took my weight and gave us some information about the next couple of days. I had the same weight as last time but I had grown 2 cm in height. My chest was the same, they think that it depends on my lost in fat of my back.

Next up was Jennifer who went through our history report. She also looked at me when I crawled in the inclined floor, examinated my visual, tactile, manual and auditory competence. I definitely have outline perception but I probably can't see details yet.

Rosalind Doman was next. She talked about what to do when my little brother arrives and that I am going to get a new program. This time the primary for me is breathing, eating and resting!
Last program was too hard for me. If I managed to do a good days program I was exhausted the next day. So now I am going to focus on breathing, sleeping, eating and in the beginning only a little bit of physical program and increase with time. I am still going to do my tactile stimulations, light reflex and stimulate my ability to see details better.New is a special balance program, start some reading and maths! I am also going to sleep in a special machine which helps me breath better, but that will be in a couple of months.

The next two days mom and dad had lectures. That means that I couldn’t be with them. But lucky me, my grandparents were with us so I was with them. It was so nice! When the other kids were in a room at the Institute from 9.00 in the morning until 9.00 in the evening with a nurse they had never seen before, I was with my lovely grandparents in our quiet apartment and walking around Chestnut Hill. I was so privileged!

First out on Thursday was Miki,our advocate. She tried me on the choice board, a lot!
She asked us about the last six months on the program and how Elliot had done.
After Miki we met Ann Ball who showed us respiratory patterning and mom and dad were able to try it. After that we saw a movie about it.
After lunch we met Jennifer again who showed us the Medullary program (Balance). I will roll down a kind of bed. You can see it in the pictures. I tried it and I liked it. They say that this part the dads should do, I don’t know why;)???

Next up was Diana to discuss my food and vitamines. She was happy and thought that we had done an excellent job. We got some more vitamins and I can no longer eat fruits, because the sugar can produce seizures. So bye bye yummy fruits!
She also had some more tips and tricks in her back pocket for me.

Finally we met Rosalind again for the summary of my new program.
She wished us good luck and said that we had done an excellent job this period of time and to keep up the good work! That was the end of an quite exhausting week for the whole family but I think mum and dad are really happy that we managed to do this and that I am the strongest and bravest little fighter in the world!!! Pictures!

23 mars 2009

Nu är vi hemma!

Först lite oseriöst.
Dagen innan flygturen till US åkte vi ned till Stockholm och Ciri och Leif. Därav slapp vi väcka tuppen på morgonen efter och bjöds på en riktig galamiddag, stort tack! Vi landade på Newark airport några dagar tidigare för att acklimatisera oss. Där ifrån åkte vi snabbtåget till Philadelphia ca.1 tim resa. Där byte vi till ett mindre tåg som tog oss mot hotellet. Vi gjorde inte så mycket mer denna dag, vi var ganska trötta.
Nästa dag begav vi oss till Museum Of Art där Rocky statyn finns.
Där ifrån sightseea vi oss sedan igenom hela staden (Tex Museum Of Art, City Hall, Indepentent Hall, Liberty Bell och Penns Landing), stannade för mat och fika.
Dagen efter tog vi en taxi ut till Wachovia Center och såg Philadelphia Flyers - New York Rangers 4 - 2!

Efter matchen tog vi tåget ut till Chestnut Hill där IAHP och Stewart Grahams lägenhet som vi hyrt ligger.
Dagen efter bestod av gos med Elliot, handling och matlagning! Kvällen avslutades med en härlig middag på Solaris. Mer bilder från resan!

09 mars 2009

Tusen Rosor!








Tusen rosor vill jag ge till min mormor Anita, morfar Åke, farmor Eva och farfar Thore för att ni är så snälla och hjälper mig med min träning och en massa saker varje dag. Jag älskar er!
Kramar också till gamelfaster Berit och Kerstin för att ni ställer upp så mycket för mig.

Puss och Kram Elliot Åström