Where does the time go!!

So many things have changed since my last blog. First I have to say Bailey went 4 months seizure free! It was truly a miracle. It was amazing to see her get stronger and faster everyday. She improved so quickly in almost everything. She went from a child who had to be held at all times to a toddler fighting to get down and running around like crazy. We felt like Bailey was free from these horrible seizures, that the surgery and meds finally worked.We had an appt. with Dr. Filloux during this amazing time. He was happy to see that Bailey was doing so good and having no issues at all. Not one issue, she could take her meds and dance all day. They never made her tired. She never had a moment that even looked like she was going to have a seizure, it  again was a miracle. But like this horrible disease it never just lets you go. It gives you some amazing time (that you can't take for granted) and then as fast as it went away it comes back!! This is what happened in the first week of June 2012. We were at music class and she had a few small starring seizures. That night she had a full seizure while she was trying to fall asleep. This is where it started again. After that day she kept having a little issue here and there but nothing like before. And for the most part everything was happening during her sleep times. Her birthday came on June 21st and for the first time she had a real birthday. She was running around happy as can be. She didn't need a nap and she was aware that it was her day!! So many people commented on how great she looked. Her 2nd birthday was a disaster, the poor thing was seizing all day. Our family is really good about putting on a brave face and continuing on, that is a hard thing to do in situations like this. I am thankful for that. No one in our family treats us different. If they happen we make sure she is okay and then go on with the party. I think that is important. But that is getting of subject, Bailey's 3rd birthday was a "Minnie Mouse" birthday. It had to be one of my favorite days in a long time. Everything was just perfect!!!!! Soon after her birthday we went on our first big trip in many years. We went to Yellowstone with my parents and sister. We had an amazing time. At this time we noticed since we were sleeping with Bailey that she was having more than we thought during the night and morning. Even though she was having about 5 it did not really slow her down. We got through the trip and everyone had a great time. It was not until we got back when things got a little more complicated. Bailey started sleeping most of the day away again. When I say sleep I mean she would wake up at 8:30am have breakfast and fall back to sleep until about 4pm or sometimes later. She would have moments during this time of waking up but only to slur all of her words and go back to bed. Of course I called all of our doctors we did not he normal check with the Pediatrician  to see if she is sick, the blood test to see if the meds are to high and then the visit to the neurologist. That appt. was last Tuesday. It did not go well. I felt like everything was going  so well before that all we had to do was change the medications and things would go back. That is not really what we were told. oh hear I go again, crying crying crying! I am so tired of crying. I am so damn emotional. Of course the first thing he tells us is to think again about Cleveland. I was a little shocked when I heard this. To us Cleveland means another surgery and to be honest I am not sure if I can go down that road again. He did start us on some new medication changes and is tapering down her trilpetal to make way for a new drug if she needs it. I am so happy that he did not just giver her a 4th medication. I feel she is already to heavily medicated. So we are going off the trileptal and going to see what happens. In the mean time we are going to get in touch in Cleveland tell them what is going on and go from there. We also have a big trip to Disneyland in October that I hope we can still do. We promised the kids that on the year anniversary of Bailey's surgery we would talk them to the Happiest Place on Earth to get away from our nightmare!! Her year anniversary is Sept. 16th and 2st so we decided to wait until October so we can see Disney decorated for Halloween. I hope we make it. I don't know what is going to happen in the next few weeks or months. It really is hard to plan anything with Epilepsy. Bailey's last seizure that I saw was last Tuesday and then she had another one this morning. We are taking it day by day right now. I never know when waking up how things are going to go that day. Dr. Filloux told us that in many cases like Bailey this is how the seizures are. They have periods where there are really bad and then they go dormant for a little while. I think that is the hardest thing for me. I keep focusing on a cure for Bailey, getting rid of these horrible things. But in reality it is starting to look like this may be her way of life. The thought of that makes me heart just sink. It is the worst feeling I have ever felt. As a mother you want your kids to succeed in life with as little hardship as possible. I know Bailey will succeed in life, but I know it will not be easy. I just have to learn how to get her down that path a happy, well rounded, "normal as possible" child. And really who is normal these days!! :)