2003
Steven is 18 years old now. He is getting MOVICOL under a medical supervision now. It is a powder with lemon taste against constipation. It should be solved in water to make a drink. However, we also have made good experiences with mixing it into yoghurt. Ever since he has regularly, almost daily bowel movement without enema.
 
Although it has got much better since the treatment with MOVICOL started, Steven sometimes is very tired in the morning because he hasn't slept enought. At those nights you can hear him laughing and shrieking with delight in his bed.
 
Steven still doesn`t walk. But he has a new game: FISHING... with a rope or towel or whatever can be thrown onto a table (or something like that) to get things pulled down from it. As you can see in the picture he is very skillfull in that.
 
When he was successfull in FISHING he always is very happy and giggles a bit. Therefore you simply cannot be angry with him.
 
Still one of his favorite things is crackling and rustling with plastik bags or paper. Most of the time he ingnores his birthday or christmas presents at first. The gift-wrapping paper is muuuuch better !
 
All kinds of noises are interesting. For instance he here is bouncing two toys together, while holding one toy with his teeth. Also works great with a spoon ( ...try it ;-)
 

Because of age now, Steven has to have at least one attendant by law to take care of all his "normal living" needs. As his parents we (of course ?) have been ordered for that by the guardianship court now. That means that we are completely responsible for him and have to write a report once a year. Addittionally to that the care supply (feeding, washing, getting dressed, medication,.... ) was also delegated to our responsibility. So this year brought a lot of changes in legal regards,... but in normal live there really is not that much of a change :-)