Very quick update

Saturday night Lily had a seizure that last 3 and 1/2 hours. We are in the hospital right now. There are a bunch more details I want to share with everyone but right now I am sleepy. I will share the story later. Thanks for reading and pls keep the prayers coming!

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

Update on Lily

Well, I think the DiaStat is out of her system now. She is back to her happy, occasionally whiny (as all 3 yr olds can be lol) self! I am very glad. I know she needs the DiaStat to stop the seizures but I can't help worry about these meds. I know they have been tested, etc but she's just so little, hardly more than a baby, really.

Guess I am just having a "worry night" as I like to call them. Oh well.

Once again thank you all for the visits, comments, support and spreading the word! You have no idea how much we appreciate it!

If you want to hear us on the radio show on Thursday you can catch it on the web at http://www.akronnewsnow.com/news/wakrnewsnow.asp

We will be on Thursday from 9:10am-9:45am eastern time zone

We are going to be on the radio!

Thursday morning 9:10am-9:45am on wakr 1590 am. Please tune in and tell your friends!

So comes the appointments and a thank you

So on the schedule for today is to make appointments for Lily. I have a whole plethora of appointments I have to make for her. School starts for me, Lily and CJ in one week, so that's going to be interesting. I already know I have one professor that is going to be understanding. I had her in the spring when Lily had lots of things going on and I missed a great deal of class. She was really great about it. I hope the others are as well. Hopefully I won't have to miss nearly as much as I did in the spring or if I do the professors will be cool about it. I really don't want to add a visit to the Dean of Grievances to my list of things to do.

I think the DiaStat is out of her system or almost out. I should probably research to see how long it takes. But she seems much happier today so I am thinking it is almost gone. We will see how the day goes. CJ has a soccer game tonight. We will see how she acts at the game. Hopefully all will be well.

I want to thank everyone for sharing Lily's blog. We have had over 250 hits! Please keep sharing with everyone you know! Your support is very much appreciated!

Now here is some info that I forgot to mention

Two things recently that happened I forgot to mention and they have me puzzled.

On August 3rd Lily was sitting on her brother CJ's lap when she decided to throw herself backwards as only a 3 yr old can (lol!) and she and CJ cracked heads. I thought poor CJ's cheek bone was broke. He was ok but they hit so hard Lily ended up with a concussion. You would think that would trigger a seizure...

Also last weekend we were at Hershey Amusement Park. Lily was around some flashing lights. After talking to the DR when she was in the hospital she told me (she being the DR) that flashing lights can cause seizures. She was going to pull up Lily's EEG to see how she reacted to the strobe during it. But I told her not to bother cuz I already knew how she reacted.

I just don't understand why these two event didn't trigger a seizure.....but then a few days later (after Hershey) she has one. I asked if it was possible for it to be delayed from the lights and she said no. The lights trigger them right away.  So confused!