The stitches are out

So many people are asking me how Miss Bailey is doing. I am so sorry that I have not been better about keeping the blog updated. Life has been crazy since we got home. But crazy in a good way!! Our Little Princess is doing very well, trying to keep her down some days is almost impossible. Yesterday marked two week since her surgery. It is amazing what two weeks of healing can do. If you looked at her with a hat on you would never know she just had a major brain surgery. She is dancing, twirling  talking and singing like crazy. She slept  a lot for the first week and had a hard time with the noise and lights, but since Tuesday she has not slowed down. I am so grateful that she is feeling better, just in time to enjoy the holidays. It has been a lot this past 4 months and she deserves to finally feel better and just enjoy life!! I am so happy it is over. It makes me cry to think of what we have been through, what we have put Bailey through and to know its all over. I guess it is just overwhelming. When you are in the moment all you can do is put your brave face on, you don't have a choice but to be strong and go forward. Especially with Bailey, before the surgery she had no idea what was about to happen and we didn't want to scare her so we just hung out and sang and danced while we waited to kiss her good night.
 Yesterday we took her to the pediatrician to get her stitches removed. She had 33 stitches on the big scar and 6 random ones from the drain and the claw that holds her head during the surgery. It took two hours to get them out. She tried very hard to hold still and be brave but she was terrified!! I don't blame her, I think I would have screamed too. I wanted to just watching!!! I am so happy to have them out, that finalized the surgery and now we are officially done!! YAY!!!!!!!!
The next question I get is about the seizures. I am happy to say that we have not seen any seizures big or small!! What a relief!! She does not even have any scary moments where they try to come but don't break all the way through. Yep she is just your normal bossy three year old and I love it. In January she will be healed enough to go back to school and start dance again. Bailey loves her classes and has really missed them. She have not been to school since September and then tried a day in October and she just was to miserable with everything to go. So now she gets to go back and we can focus on catching her up.

I also wanted to share the new we received from her Doctor here in Salt Lake. Dr. Filloux called me yesterday after reading the reports from Cleveland. He was just checking in on us to make sure things were going well at home and to Wish us a Merry Christmas. I always get nervous when the doctors call, but this call was finally good news. I get emotional just writing this. In the two and half years we have been fighting these seizures, we have NEVER walked away talking to the doctors with good news. He told us the biopsy of the tissue they removed from her brain came back showing a malformation. This means they found something in her brain that could be the trigger and they removed it. That gives Bailey better chances of the surgery working!!! Our hopes are up and it feels good to think we have a good chance at giving her a normal, happy, healthy, life!! So Happy!!

Merry Christmas Everyone!!

Quick update

We are out of the hospital and taking two days at the Cleveland Clinic Guest house to recover before we make our way home. If feels so good to see Bailey up and walking around. She is still a little unstable but by the time we get off the airplane she will be back to normal. The surgery went well and the recovery has already started. She is talking like crazy and regaining strength in her right hand. I am so proud of my little Bailey Bug, she has been so brave through this whole thing. The first two days after surgery she just looked at us with these big sad eyes. It was heartbreaking to see our crazy little girl down like that. It's not like Bailey to be sad or quiet. But I think she just needed some rest because she is back!! I just love her personality. And now she is so bossy! I try not to laugh as she is bossing me around but its so darn funny. The best moment of our whole stay was today when the doctor was trying to leave the room to see another patient. Bailey looked at him as he said good bye and said "where you going?" he answered and she didn't like the answer so she said to him again "where you going sweetie?" We all just started laughing. I looked at her and said "did you just call the doctor sweetie? And she just laughed. Best moment by far. Again I love this little girls personality!!  Well just wanted to give a quick update on where we are and how our Princess is doing. Thank you again for all the prayers and well wishes. It was a sad couple of days and it helps to hear from everyone. I am happy its over and I never want to see another hospital again. Oh but I have to say the sweet nursing staff gave Jared and I an extra chair to sleep on so we didn't have to share a bed this time. SHHHH don't tell. That is so against the rules. But that's Jared and I, rebels we never follow the rules!!

                                                        First Smiles!!

                                                    On Our way to the Hotel

                                          Walking around for the first time

                 Just waking up from Surgery. She loves her Eugene Doll from the Disney show Tangled.

Surgery take Two!!

Well it came fast, but it's over now and everything went great. Not only did it go great but the tissue they removed was abnormal tissue. In the past they have only seen healthy tissue so now we have confirmation that something was there and they got it!! 
We checked in at 5:30 am and after all the morning rounds and huddle, they started her surgery at 9:18 am.
I don't have a lot to report just yet. Bailey is still very sleepy from the whole thing. She has opened her eyes a few times and has said four words. That is also good news since they thought she would have some speech delays or loss  from the procedure. Even though it would have only been temporary Jared and I just teared up hearing that sweet little "mom" and "dad." So far the only thing we have seen is a little weakness in her right hand, again something they told us might happen and only temporarily. Overall the day went well, the surgery went great and this mommy and daddy are tired but relieved.  It feels like I can take a deep breath for the first time in a long long time. We have been fighting this journey with Bailey for two and a half years, we are exhausted but hearing the surgeon say he found something today made everything worth it. What a crazy journey this has been. I had a hard time wrapping my head around one Craniotomy and tissue resection, but now she has had TWO!!!! Not only two resections but she has had a total of 4 brain surgeries. That is just amazing to me.  We have made it through the bad and now its Bailey's time to live a new life free from doctors, hospital stays, pokes and seizures.
Good Night
Love
Jared and Amanda

Back to Cleveland

We made it safe and sound. The flight was great and the taxi ride was thrilling!! We arrived just in time for dinner and Bailey ordered her favorite, Nachos with lots of dipping sauces! 

It amazes me how sweet and happy my little Bailey is. She knows where we are going, she knows what they do in the hospital but that little princess was so delighted to get on the plane and fly!! I was worried that she would never get on a plane again after our last visit, and maybe her desire to fly will be gone after this trip, but for now nothing we have done has changed her outgoing sassy little spirit. Sometimes I want to close my eyes and pretend I am three years old. Not a care in the world, not understanding the hard choices that are being made for her. To live each day happy and twirling around in circles for hours singing "I knew you were trouble" by Taylor Swift. I am so grateful for my happy child. It's hard to stay sad for  long when she is jumping around you saying "spin mommy spin". She is such a princess, and not one of those spoiled princess divas. I always worry about her since she has my undivided attention when we come to Cleveland or any hospital stay. But as soon as we get home, she forgets all about me to follow her brother and sister.  Tonight we checked in with Madison and Korbin and used the face time on our phones.  As soon as the kids saw each other they just started laughing and making silly faces at each other  It made my day, it made the bad go away for just a moment, it made me so proud to be their mom!! They all love each other so much. They are her biggest cheerleaders, they can make get her better faster than anything or anyone else. All she needs is Korbin's crazy faces and Madison dancing around her. Not only is Bailey strong but the selflessness  Madison and Korbin have inspires me.They are six and eleven and for the last three years Bailey has dominated our time and energy  I have never heard an ill word from either one of them. They don't hold any resentment or anger, they just want their baby sister to get better. The strength it took Madison to kiss her sissy goodbye without showing her how sad she was  amazed me. I could not do it and yet her she was just giving her a big kiss fighting the tears back. I love them all so much and love being there mommy!! It really makes this whole thing so much easier when you have amazing kids and family! We have been blessed truly blessed!! 

This journey has been hard and at times I have felt like I was not going to get through it. I have wanted to crawl into a hole and hide from everything and everyone. But here we are a day away from the Big Surgery and hopefully a fresh start and a life free from seizures. Even if she can't be seizure free I believe very strongly that this surgery will give her enough relief from them to live a normal, happy, healthy and fulfilling life. 

Thank you to everyone praying for Bailey and all of your kind words and thoughts. We appreciate them so much. All the encouragement helps get us through the day. We love you all and will keep you updated often during these difficult few weeks ahead.

Love 

The Bates