Smiles.....

Today Nana spent the day with Elle. (Grandma R also stopped by for a visit) She was smiling today!!!!! Laughing too!!!! Her chest is still tight but she is coughing alot so that is good. We hope that she is turning around and get better and better so she can come home.....

Kaden still has a fever off and on. He is coughing abit too. I had him in for some blood work this afternoon. Phenobarb level, CBC, and Cap Gas......his Phenobarb level came back at 59.1!!!!!! HOLY COW!!!!! three days ago it was 43!!!!! Cap Gas was normal and the liver function is getting back to normal......we are decreasing the Phenobarb dose tonight and go back for blood work in 10 days.......Whatever happened to playgroups and swimming lessons......guess those are not in our 'daily fun'......we get blood levels and sickness.....sure is getting old fast. All we ask for is a little piece of normal. When I was talking to the Neurology Nurse today she told me that children with special needs are always given to 'amazing parents' cause not many people in the world could handle this......I wish we weren't 'amazing' if that's the case......just want them to have a healthy life without people poking them, suctioning them and making them cry......and to enjoy all the things other children do......

Well, one of us will be off to the hospital tonight. Paul is now on holidays but of course we will not be enjoying any 'family time' cause we can't bring Kaden to the hospital cause of all the sickness that lurks around there. We will see how the weekend goes and maybe we will have Elle home for some of Spring Break......