Purple Day FUN!!

Purple, purple and more purple!! Its a good thing I love the color purple or we might have had some problems.  I love everything that "Purple Day" stands for. Its a day to let the world know about epilepsy and to educate those who are afraid or have misunderstandings about what it really is.  I have to say first I am not an expert... I knew nothing about seizures when all of this started. I thought my sweet baby was just trying to "poop" when she made those silly faces. Little did I know that her "pooping face" was an actual seizure. So I am happy that people everywhere can take notice of the purple or read  the social network sights for one day and ask What is Epilepsy.
So where to start on this fun crazy day. First we had "purple cookies" for Madison's class and Korbins preschool. I was so proud of both of them for standing up in front of their classmates and talk about what our family has gone through. Madison asked her class if anyone knew what epilepsy was and only one person in her entire 5th grade class raised their hand. That really shocked me. Korbin was so funny he just said "it's purple day for Bailey" he is so cute! After the classes we came home and while Bailey napped  I got everything ready for the night. I made a purple zebra cake. It was colored with dark purple and light purple cake. It did not turn out great because the colors were to close together to see the strips , but the family humored me and said they loved it. Madison and Korbin did a great job at decorating our cake. After we decorated the cake Jared came home and we went to the Murray City building for a balloon launch. We wrote names on tags for everyone that we knew with Epilepsy. The kids were so cute with all of those balloons and it was fun to see them float up so high across the sky. I think this will be a new tradition for our family on every "March 26th"! After the balloon launch we came home for dinner. I made purple pancakes, eggs and milk. It was a little wierd eating everything purple but we did it and had a lot of fun in the process. Overall our "Purple Day" was a fun new adventure and I can't wait to do it again next year!!!!  Oh and today marks TWO MONTHS WITH NO SEIZURES!!  IT CAN"T GET ANY BETTER!!!!

A day at the Zoo

I am happy to say that we finally made it through the Zoo seizure free!! Something about the Zoo just seemed to trigger her, but not this time. We went and conquered  like any other normal family there!! I LOVED IT!!!!  We had so much fun. 

          Her fist hospital stay! She is so funny! It was really hard to keep her happy in that crib for three days!

                                                           Love this one!!!!

This was her very first EEG. The funny thing about this EEG was it came back normal. The same day I received those results we were up at the hospital for a three day stay and she was diagnosed with partial complex seizures on the left side. May 2010. A lot has changed since this picture for starters she has HAIR now. So cute!!

Happy Doctor Visit today

Bailey had a visit today with the wonderful Dr. Filloux. I was a little nervous for this appointment  because I didn"t know what he was going to say. I had called him Feb. 28th to tell him the good news about Bailey making it one month seizure free, and from there his office called me back and said "he wants to see Bailey". I was happy to hear this since I look forward to asking him all sorts of questions.(he really should see us more because in the three month waiting period I come up with A LOT of questions!) He was great today and happy for Bailey and for her turn of events.I love how funny Bailey is when we go to see any doctor, she always says to them when they walk in.."no owie, no owie". So cute I need to record it and put it on the blog. It makes me laugh every time. He told her no not today and she was then relaxed and even let him measure her head.WOW no one can touch her head.  Like the epilepsy world he had no explanation as to why they stopped or if it was the surgery, medications or both. REALLY!! Still no answers. He talked to us about trying to take her off Vimpat since he feels it has not done much, (I was happy when he chose that one because it is 158.00 a month!) overall we do not feel comfortable yet  making the changes but if she is still seizure free come 6months we will give it a try. He says the problem with dropping a medication is you don't know if the seizures came back from the medication decrease or if her seizures come out of the "honeymoon stage"... is there anything easy with epilepsy!! Either way I hope she makes it 6months and I really really hope we can take her down to only two medications a day. Dr. Filloux was very encouraging today, We have never walked out of an appt. feeling very good, so today was a first!!! He had so much confidence that Bailey was on the right track for a seizure free life!! I love to say that!!!! Things are just getting better and better. She really is amazing. I just love her so much, and so proud of her for everything she has had to overcome! Next up we have to do blood work tomorrow to check her liver and Depakote level and then April 10th we are going back to Primary Childrens for another EEG. Bailey really does not like the EEG testing because they have to put so much on her head and she they have to hold still for a long time, but this one is only for an hour and we don't have to spend the night!! That is awesome!! 

Thank you for reading!! Have a wonderful night!

Seizure Free and loving every second of it!!!

Wow I have a lot to catch up on. Let me just start by saying Depakote is my new favorite drug!!! It worked. After trying almost every medication available to Bailey because of her age and type of seizure, we finally found the one that worked! I am not sure if it is the combo of the surgery and medications or just the new medication but either way Bailey is Seizure Free!!! She has not had one since Jan.28, 2012. WOW!!! I can't not believe I am saying this. I was starting lose hope that we would not find the answer to relieve her from these daily seizures. It is crazy to see the difference between a seizure free Bailey and when she is having them daily. Her speech is incredible right now. She is speaking in 3-4 word sentences and her vocab is increasing every day. For those who have been following our story, we were supposed to go to Cleveland on Feb. 5, 2012. We called all of her doctors and were advised to postpone our trip and just play the wait and see game. This game is something we  do a lot.  I am not very good at it, but it is much easier when things are going in your favor. I was still a little nervous for the first month but now I don't know why but it just feels different. Like they are gone and not coming back. I am trying not to be naive and say she is forever seizure free but for now I am going to take a deep breath and just enjoy!!