Life is normal...?

So here we wait and wait and wait...we have been told that Dr. Sullivan will be presenting Raegan's case to the surgery board. We thought it would be this week BUT they have decided that we need one more test to try to get as much information for this crazy puzzle. So we will have a PET scan with an EEG on October 10th. Time is just going to tick, tick, away and not fast enough for us. It really is a double edge sword because you just want all of these tests and results NOW but if we had them now then that would also put us possibly closer to the thought of surgery. However it is really difficult to see Raegan having seizures everyday. We usually see two a day but lately have seen as many as four. Sometimes we get lucky and she bounces back right away and other times she is wiped out for a couple of hours. A mom had asked a question "How do your other children hand the epilepsy"? I at the time didn't respond because Carley I thought was just too little but she proved us wrong shortly after. As Raegan had an episode Carley patted her leg and said 'It's ok Raegan, it's ok" (bring out the kleenex) this particular time Raegan was wiped out and cried to go lay in mommy's bed. I obliged but what followed more than melted my heart. Once I had Raegan tucked in Carley crawled in too even though she had only been awake less than two hours. There she laid still as a mouse for 45 minutes with her sister...

On a happier note we have gotten to spend some time together as a family. A trip to the circus proved to be a lot of fun. Sno Cones, cotton candy, the animals! I also slipped away with the girls to Lake Tahoe. Even though we endured car sickness with Raegan that could have proved to put a damper on things we just rolled with it. We had so much fun with Aunt Shannie! Tonight Raegan decided that she was going to go on a roll down the driveway, she squealed in delight! 

As always be blessed dear friends! Until next time...

Changes are in the air...

So it's been awhile since I've updated. Life is good and blessed always even on the days I just want to curl up and stay in bed. Raegan is such a little trooper and doesn't complain at all. She is transitioning to a new preschool here in town. It is only about 5 minutes from the house and will be going two days a week. It was very hard for ME to make the transition. At our "old" preschool we were at when she began her seizures this time they were with us every step of the way as we started new medicine, they watched her video to see what her seizures looked like and it was just a comfort since we were all walking this new path together. So as we left Ms. Melissa, Ms. Kelly and Ms. Suki it was with tears as I felt my safety net was gone. Short lived anxiety though I guess since we went to visit for the day together before she started and she had a seizure so I was able to show her teachers. Well, that proved positive since the first day by herself (momma was anxious at home) sure enough she had one. Her teacher recognized it right away and now I feel like I can trust she won't have to go through an episode alone.

Several people have asked what the results were from the MEG scan that we went for in SF. It came back and confirmed what the EEG had told us. She has definite abnormal seizure activity in a specific focalized area on the left side of her brain. However, they still do not "SEE" an abnormal spot on the MRI. Not that there is not an abnormal spot but they don't SEE it which means there is no way at this point to define the borders of an abnormal area. So what now? Well, Dr. Sullivan is presenting her case to his surgical board/team the third week of Sept to see where to...only a little nerve wracking right?!
In the mean time we have added her third medicine to the cocktail. We are trying to wean her off the second one she was on as her behavior was OFF.THE.HOOK, impulsive is an understatement! Unfortunately we have outlived the "honeymoon" period of six days without a seizure and we had to up her third medicine today :(

To say this road is up and down is an understatement. It is so hard to go days without a seizure to see one. I had posted a video of a teenage girl who has been battling Epilepsy for three years and she said she had to decide to TAKE CONTROL and not let the Epilepsy CONTROL HER. What sounds like something simple is actually very difficult. I have spent the last almost 2 months SEIZED by Epilepsy. I have not wanted to leave the house, stopped going to play dates, have sat at home all day everyday. It is not easy to move on but this last week decided to TAKE CONTROL back. We have been out more and have even gone for a few walks. My cleaning supplies were actually put to use and I was able to get out of the rut a bit. However I still ask for grace and patience if it seems like I have ignored you or play dates it's not 'intentional' it's a process.

Love and Blessings to you all!!!