I had the privlage of driving him around in the fire truck over the weekend. I know he enjoyed it, but, I can see that he’s not the same smiling, up beat, full of life 5 year old that he once was. I think Kadens dad had more fun than anyone 
His latest care page update…
The morning appears to be the worst time of day for Kaden. He seems to experience the most pain and issues when he wakes up; maybe because his meds have worn off? Yesterday he woke up and out of the blue he said, “I want Grandma Linda to come here”. I was a bit surprised at his request considering that lately he really doesn’t want much as far as visitors go. I told him that Grandma and Papa were coming next weekend along with my sister’s family but he insisted, “I want her to come now!!” Considering that he wasn’t feeling that well, I figured that he must really want to see Grandma and that I better call my parents. So I got Gma and Papa on the phone and told them that Kaden wanted them to come…NOW! It’s a 5.5 hour drive for them and although my parents usually don’t do anything spontaneously they agreed and were in their car on their way within an hour. For the next 5 hours Kaden repeatedly asked me, “Is Grandma here yet?” Luckily he slept most of the afternoon otherwise 5.5 hours would have seemed like an eternity to him! He perked up when they got here…but it took him a little bit. We’ve noticed that it takes Kaden longer to adjust to having people around no matter who it is. I think he feels sad because he’s “not himself”. Or it could be the Decadron…he is a bit bossy these days! And Kaden always gets his way these days…having Grandma and Papa here included!
Kaden also had a nice surprise from Bob Pries and his son Isaac last night. They brought a fire truck to our house, lights flashing and all, to give Kaden a ride. THANK YOU Byron Fire Department! Kaden didn’t want me to go so only the boys went. They rode down to RCTC and parked in the parking lot and sounded the horn and sirens. So if you were at RCTC last night and saw a random fire truck in the parking lot…that was my husband honking the horn! Kaden was getting mad at Logan because he kept honking the horn…who was the kid in this situation?? 
Kaden had a pretty good night. The morphine and meds are working well when Kaden needs them. We’re still only giving minimal amounts of morphine.
This morning was rough again. Kaden woke up having to go #2 but he couldn’t because his back was hurting and he couldn’t push. We gave him a laxative so that should kick in pretty soon. He’s on the couch watching TV with Papa. He ate half a vanilla donut and 2 chicken nuggets today. Kaden does have alot of Papa Sam in him: 1) he likes to eat, 2) he likes to lay on the couch and watch TV, and 3) he has a buddha belly. If only the belly was from eating too much!
Kaden is feeling fairly good right now…hopefully that will continue. He doesn’t complain one bit but he looks somewhat uncomfortable…kind of like a women that is 9 months pregnant. I just wish he liver wasn’t even a factor in all of this…it’s such a vital organ!! His body continues to amaze me though. It’s taken alot but it’s still holding tough.
We have asked Logan’s family to come see Kaden on Friday (rather than wait until after Christmas) and then my sister’s family is coming on Saturday. We just want to make sure that our family has time with Kaden while he’s still feeling decent.
I know that you all know that we are a social family and that we truly appreciate all of the support. However, I would ask that during this time, because Kaden’s health and moods change so quickly, that if you want to visit that you call in advance. I can’t assure you that we will be able to accomodate you, but please know that we are just trying to keep Kaden happy and our focus has to be on him. He’s not the same smiley, happy little kid he once was. He likes it dark, quiet, and gets agitated easily when there is “too much talking”. But if that’s what he needs then that’s what we will give him. We know you all understand.
We are just taking one day at a time…