Wednesday, September 17, 2008

Prader-Willi syndrome

Have you read up on it? Amazing disability and reading about it doesn't even begin to explain living with this..

EXAMPLE: I sat to type the pat post while they all sat at the table. Tressa has a worksheet. I am less than 10 feet from her full view. She some how figured out in the moments she was home that Kaitlyn left food in the bathroom loading her snck this morning. Kaitlyn takes a mid morning snack and doesn't get her bus until 8:45 am. Tressa leaves at 6:30am... a box with 7 breakfast bars 160 calories each so times 7 HAD SHE GOTTEN TO EAT THEM.. I get backto the table, Tressa has her paper done sloppy but completed. SHe asks if she can do the rest when Vickie comes which is a normal thing... She goes in her room to change and slowly shuts the door to a full close QUIETLY... not such a normal thing. So I slowly open the door to find her unloading the goods (breakfast bars) from under her clothes....... on to er bed.. WIth very wide eyes she says "SORRY MOM" I take them to the kitchensee the box on the bathroom counter to the girls bathrom and help her get into her swim suit and she is swimming. PWS I can not look away for a second....