November!!! It has been a crazy month. We were back up to Primary Children’s Hospital for more test, we added a fourth medication, talked to the doctor about the possibility of 2 more surgeries and then after careful consideration we have decided we are going back to the Cleveland Clinic for a second opinion. So let me start at the beginning. As I had mentioned in my last post, Bailey started to have seizures again only 8 days after the second surgery. By Nov. 1st she was having about 3-4 a day By November 9th she was back to having ten a day. I made a call to the on call doctors up at primary children’s and that is when we added her fourth medication and took her in for more EEG testing and evaluation. At this point Bailey was having a total of 50 or more a day. It is just heartbreaking to watch her physically go through that many seizures. They were aggressive and attacking her every 2- 4 minutes. They definitely won this time around. I have never seen Bailey bruised like this. From her head to her knees everything was black and blue. We were admitted for testing on November 22nd and in true Bailey style gave the nurses and doctors a run for their money. She is so busy and not very easy to get a work up done. She is still scarred from her last stay at the hospital and was not about to let them get close to her. The EEG tech asked if she was going to fight and I just had to laugh. He was not our normal EEG tech. If he had been he would have seen Bates on the chart and ran!! I guess the one thing that was nice about this last stay is that we have been on the second floor so many times all of the nurses and techs knew us. It was refreshing not to explain her story another 20times. They just took great care of us. We also go to share a bed this time instead of a crib and Bailey LOVED her big girl bed. After she had 35 seizures on the EEG machine, the wonderful team said we could leave! The next day I was busy trying to get the glue out of her hair for thanksgiving when Dr. Filloux called. He said that our team of doctors had reviewed her EEG results and they wanted to go forward with a SECOND 2 part surgery. I was not prepared for that conversation!! I think he could tell and said, “Have a great Thanksgiving and we will talk more on Dec. 1st.” I was grateful for that. I just needed a break. Wednesday had been a bad morning and I was trying to get Korbins treat ready for preschool and Bailey was just not having a great morning. She had 10 seizures while I was trying to get us out the door and during that time she had gained two new bruises and a moment in the bathtub that I will never forget. She was seizure free for about 10mins so I thought we had broken the cycle. I placed her in the bathtub started to wash her body when she went into what felt like a seizure that was never going to end. (In real time it was probably only 45 seconds.) As she started to rock violently back and forth I grabbed her upper arms to stop her from hitting the sides of the tub. You are never supposed to restrain someone who is having a seizure! I was trying to pick her up to get her out of the tub and I swear I was going to break her arms or her shoulder was going to pop out. Finally it ended and I was able to pick her up and get her out of the tub. I went to wrap her in the towel and she went into another violent seizure. I laid her down and just watched in horror as she flipped across the bathroom floor. They had never been that aggressive before. When she finally came out of the second one I just picked her up and we both cried. Bailey was a mess, I was a mess and I still had to get Korbin to school with 17 Thanksgiving school treats. Luckily I have the most amazing little guy who is so easy going. When I looked at him and asked if we could skip treat today for school he just looked at me with those big blues and said “sure mom, no problem”!! Oh how I love him!! After that horrible morning I think God and Bailey knew I couldn’t handle anymore at that moment and they STOPPED!!! I was so thankful that for Thanksgiving we were able to have a normal family holiday free of seizures!!! They soon came back and that is what leads me into our last topic. CLEVELAND OHIO!!!! Over the past few days I have been in contact with some incredibly strong and amazing women!!! All who have gone to the Cleveland Clinic when Primary Children’s hospital could not help their children. They have amazing success stories and have given me hope when I didn’t have much left! I can’t wait to hear what they will say and what they have to offer in healing Bailey!! We have an appointment with our team here on Friday. Jared and I are going to ask if they will send a referral for us to Cleveland and then hopefully we can get in to see a Doctor the first part of January. Oh It feels so amazing to have HOPE again that someone, somewhere can fix Bailey’s brain!! I believe in miracles and Bailey is a miracle. My grandma sent Bailey the sweetest saying today. It is a little Teddy Bear that reads “Love bears all things, believes all things, endures all things, Love never ends!!” I hope everyone is having a great night!!! I will update you soon and hopefully with GREAT SEIZURE FREE NEWS!!!! It can happen I know it!!!
