The radio and another "worry night"

First off I want to thank Ray Horner and 1590 am for allowing us to talk on the radio this morning about Lily and the blog. Ray was awesome, made us very relaxed and comfortable! It was really nice to discuss what was going on with Lil on the air and it was a great experience for all of us.

Now I had totally planned on making this blog about Lily and only about Lily, but my thoughts and feelings are going to take center stage right now. I am normally a very upbeat person but am not feeling very upbeat right now.

We were clothing shopping for school for the kids today. I was doing good, having a good time looking at all the pretty girlie clothes for Lily. I came across this really cute jumper set in her size that I thought would look adorable one her. Then realized that I couldn't get it for her for school. The outfit would be to complicated if she were to have a seizure at school and they needed to give her the DiaStat. And then it just hit me. You know, before her tonsils and adenoids came out I was so certain that  was what was causing her seizures (lack of oxygen at night) but they are gone and have been gone since April. Then she had the seizure last week. I guess it just hit me tonight that this is just not going to go away. Not now anyway. And it's just depressing me. I know it's stupid really. There a lot worse things that could be wrong with her. I know that but right now it's not making it any easier.

Every night I am on "seizure watch" and am not getting much sleep. The sleep I do get is pretty light and unrest-full.

Today I miss how things used to be.....wish they could be that way again but I know they never will. Even if her seizures become controlled I will always be on "seizure watch".

Sorry so down, should be better tomorrow.

Thanks for reading