Video of Kaden....short but sweet!!!!

This is a video of him today. I ran out of batteries so it is short. The other is just a picture of him today. Looking handsome as ever!!!

Talking.....

Elle stayed home today from school cause she had a bit of a sore throat. She can't tell us that but when she makes noises her voice sounded different. She is otherwise happy and playful today. Good day to stay home with all this rain.

Kaden also had a good day! He was a bit sleepy yesterday and wasn't as attentive but he is back to himself today. He was 'talking' today alot and it was super cute. He was so loud that it was hard to carry on a conversation with the nurses!! Anyways he talked himself asleep and I left around 3:30. Elle's nurse is done at 4:30. His Phenobarbital level was 32 so they are bumping it up a little so we can see if he can maintain a more constant level. Paul had a conversation with his pediatrician but I haven't had a chance to find out the details yet. Paul was busy in a meeting when I called him. Kaden was also doing good with sitting today. With just a little support at his tummy he sat up and played with his bells and looked around.

Kaden's old room

Its hard to see how big is was but there was alot of room for his stuff plus a big leather recliner, other chairs, and two big mats for Elle.....

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.

Ketones!!

Kaden has had ketones of 8-12 this weekend. That is good. Hope that the seizures stay away and he can come home soon....this hospital thing is getting old....VERY OLD.....He was once again happy and in good spirits this weekend. He collected a bag of candy that we are quickly eating. Was at the hospital tonight and he was cute as ever. Playing and laughing.....by 9pm though he was tired and fell asleep.

Elle was with us all weekend at the hospital but by the end of this afternoon she was about done with this hospital thing too! She had a melt down this afternoon and when we got home she was 'melting down' in her car seat. She just wanted to be home. I don't blame her.

Paul is away in Atlanta for work so that makes it a bit tricky here at home. My mom is staying over while Paul is gone. That's a help. I think I have tomorrow and Tuesday night organized for Elle in the evening....Michele and ?? who ever she gets to help her and Mom and Dad on Tuesday night. Then Paul will be home later on Tuesday and we will be back to normal....well, normal for here.

See what this week brings....something happy I hope.....:)

Happy Halloween......

Kaden had a great day today. He is getting stronger and stronger every day. All week he has been getting stronger and stronger. Tonight he was able to sit up on his own for about a minute without us holding him!!!!! It was super cute with his Tigger costume on. He is constantly moving and wanting to sit up. Still smiles like crazy and giggles when you tickle him. His Phenobarbital blood level today was 33. They want it mid 30's to low 40's. His ketones were 4-12 today. The higher the better!!!!

Elle was off to school today. She went as a Kleenex Box!!!! Auntie Lori made it for her last night and it got rave reviews!! Everyone loved it!! We are orientating a new nurse Deanna. She seems nice so we are hoping that it works out.

We all went to the hospital to spend the evening with Kaden. His first Halloween!!!! PSCU (where he is at Children's) had 50ish medical students come through all dressed up giving out candy to the kids in the hospital. Both sets of Grandparents and Auntie Lori came for a visit tonight too!! Fun times at Children's Hospital!!!! We are off the hospital tomorrow. Paul is going away on Sunday and comes back Tuesday night. Not my idea of fun but I will have to make it work somehow.

Celine Dion....

We were so close it was awesome!!!!!!!!!!!!!!!!!