Disappointing day....:(

Today is disappointing not because Kaden is having seizures but because he was moved to CH4 monitored room.....I won't get into why I think this move is a bit political. We are very unhappy with this move for many reasons. Kaden was VERY well taken care of in PSCU. The nurses there treated him like he was their own. We never had to worry that he may be laying there alone staring at the ceiling. In fact sometimes they just wanted him to themselves and didn't want to share him with us!!!! Comforting to know they love him like we do. They truly are very special people in PSCU that go out of their way to care for him. (and Elle) As for me, I have spent MANY hours, days, months and years with them and they are some of the most special people I have ever had the pleasure of knowing!! As for this move.....well, now that he is in the monitored room there is no place for all of us to be like a family on the weekends anymore...the room barely fits Paul and I. It can also be a breeding ground for infections/sickness. I know we can't control Kaden and when he is ready to come home I just wish one thing could have worked in our favour and we could have stayed in PSCU where we were comfortable and he was extremely well taken care of......shouldn't we be allowed to have something work in our favour?? Anyways, his ketones are holding steady at 6-8 so that is good. Still need them to get up to 12-16 but its coming along slowly. Yesterday he was a bit sleepy. Not sure if that is due to his high Phenobarbital level (40.2). He was back to normal today happy, smiling and babbling away!

Elle was a school today but had to have a nap from 9am-almost 11!! She was up at 4:49am on and off till 7am. Not surprised she was tired. Other than that she is well and happy at school. They are just trying to stay away from the 'sick kids' as we don't need her to get sick again. Two times in the hospital in a month and a half is enough when you have another one in there already. The nurse are VERY good at steering her away from the 'infected ones'. There were a couple of sick kids in grade 1 today so they just stayed in their own zone or would go to the other class with the skills for living kids. They clean everything off that she touches (she puts everything in her mouth) so that we can minimize the times she gets sick. This may sound crazy to people who don't live a life like ours but its not fair to Elle to have her around sickness, she gets sick then has to be hospitalized when we could have prevented it. Not rocket science to us.

Other than that Paul is coming home tonight so that is a relief. He hates traveling so he will be glad to be home, sleeping in his own bed.