We are back and going again!

I did not even get the bags unpacked and they are telling us to go back! So back to Cleveland Bailey and I go for another round of tests!! Except this time I have to go without my awesome hubby and we will be gone for TWO WEEKS!!!! All I keep saying to myself is " I can do this, deep deep breath!" I know we will be just fine once we get there, its the traveling by myself with a three year old that makes me worried. I never travel so the airport is all foreign to me. I guess when you are thrown  into a situation like this, you learn really really fast!!! And if all else false I will just start to cry and someone at the airport will take pity on me and show me the way. With that said I will get down to the real reason why you are probably reading, not just to hear me gripe about traveling, but about my precious baby! Yes she will always be my baby! (I always say "my baby this, my baby that," and then when I tell people she is three they look at my funny.) Bailey is doing great. Her seizures are not gone but under control and for the most part only happening while she is sleeping. So thankful for the new medication Carbamazepine. It even comes in a chewy pill and she loves it!! We stopped using the depekote because she spit it out so often that it was not at a therapeutic level. So now she is only on two medications! Oh that makes me happy!!! As most of you know we went to Cleveland in September. We have been told so many wonderful things about the hospital and team there, we were excited to go. I don't think it was our last ditch effort to fix this but we are getting really close. We arrived and it was nothing like I thought it would be. It was much worse. I am so not a fan of Cleveland Ohio!! But it does not matter what the city looked like, if the doctors are great then we will go and go again. We met with Dr. Lachhwani on Monday. He was kinda and soft spoken. Spent almost an hour listening to our story and at the end of the appointment I felt relieved we had finally met the doctor we heard so many good things about. He speaks with a confidence I have not heard before. He does not promise miracles but tells you like it is. That is something I have come to appreciate. I need real answers not made up ideas or "we think". After our appt. with him we went and checked in. We were admitted to the 5th floor. It is the monitoring unit. It was nice to be with families facing the same challenges we face and dealing with nurses who know what to do if she has a seizure and not be afraid of them. Once we checked in that is when "hell week" started!! First was the two hour neuro psychological evaluation. We were supposed to go in for the PET scan on Tuesday but for some reason the nurses there could not get an IV in. They tried 8 times before they finally got one in. It was so hard to watch them try for three straight days. Bailey was so terrified and is now scared when it comes to needle. So because they could not get the IV in we had to cancel our tests on Tuesday and push them to Wednesday. She the MEG scan in the morning and then the MRI at 2:00pm. Poor baby did not eat breakfast or lunch on Tuesday, Wednesday and Thursday. On Thursday morning she had the PET scan and then we met with our doctors Friday. The bad news is the MRI scan came back clean. That was the big one!! We were praying they would find a malformation or something pointing them to the trouble spot. But everything came back clean. SO here we are going back for more tests! The next round of tests consist of a Spec Scan, EEG monitoring, MEG scan and another MRI.We are also going to do a SEEG. That is a Stereoelectroencephalography. I don't know how to better describe it than copy what the Cleveland Clinic says. It is an invasive surgical procedure that is used to identify areas of the brain where epileptic seizures originate. With SEEG, doctors place electrodes in targeted brain areas, which are then monitored to precisely locate seizure source. When the seizure onset is localized, a surgical resection and a good seizure outcome may be possible. 
I am excited for this test and feel its a great way to look at things and not have to open her skull up again. Well that is about it for now, we went for a week and still don't know much! Ready for some good news!! I hope everyone has a good night and thank you for taking your time to ready about my little bug!! 

We are Exhausted!!

I hate this disease. I hate the control it has on my family, my baby, my life, all of our lives. I feel when they are back all we do is eat, sleep and breath SEIZURES!! They take away from everything and everyone in this house.Last Friday we lost all control. We were in Midway at my Parents cabin when she woke up at 2:00am with a seizure and they have not stopped since. I don't how to get control again..The amount of medications we  give her should be helping but they just keep pushing through. I have seen hundreds and hundreds of seizures but nothing like these last 7 days. They are aggressive and violent and starting to get longer. It is so frustrating sitting in a hospital for two and half days and leave with no change. There are moments when I think "we have this, they are slowing down" but then they come right back. I hope Cleveland can help. My fingers are crossed that they can find something or tell us something that will make the situation better. Life is so crazy right now and I am so grateful for all the well wishes, prayers, thoughts and support. We are so thankful for everyone that is  helping with Baliey, Korbin and Madison. Our friends and family are an amazing support system. Thank you so much for making this a little easier. If we did not have your support things would be so much worse. I am excited to go to Cleveland but very anxious. I feel that it can't come soon enough. The traveling will be long and the stay at the hospital for 5days will be longer. I pray we make it there in one piece and that Bailey, Jared and I have the strength it will take to get us through this part of her journey. I will keep the blog posted more. Since last Friday Bailey has had well over 200 seizures. (I lost count) We need to get this under control and fast. I feel so bad for her little body. She is just so beat up from them. Hopefully soon we can find her the relief she needs.
Forgive any errors it is getting late and I am so tired.