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

What Miss Bailey has been up to........

Pretty Nails
Daddy painted the blue and mommy painted the pink!!!!

Tired of sitting in Bed!!

Happy Halloween from
My Little Cone Head

Daddy loves!

The news we have been waiting for!!

Wow has it been a long two weeks in the hospital! I am so happy we get to leave on Friday. Only two more nights!! Yay!! Today is Halloween, and since Bailey can't leave her bed the staff tick-or-treated to her room.  They did an awesome job for all the kiddos on this floor that can't leave.  It is hard to be in the hospital for a Holiday this is the most home sick I have ever been.  It has been a hectic  and hard week. Since the surgery all we do is sit and stare at Bailey waiting for a seizure or watch the doctors parade in and out with no new information. It will seriously make you go crazy. I am officially there!!! I think the nursing staff are counting  down until we leave too! :) But finally after two weeks in the hospital this time and a week in September, so a total of 19 days of testing we officially have an answer!! It is great news! They have found 2 locations that are the  starting points to the electrical storm inside Bailey's head. These two areas are constantly misfiring and always spiking even if she is not seizing.  This is where it all starts, and then within 20 to 30 seconds it attacks the motor area and language area.  The first area is right on the edge of her first resection, and the second area is in the insula, the area beneath the the frontal and temporal lobe. They say that the insula is sometimes one of the hardest spots to find.  Both of these areas are safe to remove however the insula is a little more tricky since it is deep inside the brain. According to the Doctor he will peel back the brain like an orange to get to this area. This part should take around 2hours.  (I am not sure of the total surgery time) Overall everything that has come back is good news. They only obstacle we face is her speech. We are removing around that area and if it has not relocated itself already we will see some vocabulary loss. She might also experience some weakness in her right side. Her speech and weakness will come back with time and therapy. I feel very good about what they have found and all of the testing we have done. They have checked and rechecked to make sure they feel confident this is what we need to do to give Bailey her best chance at life. So now we have scheduled the next Surgery for Dec. 6th. Yep that is right we leave to go home on Nov. 2nd and come Back to the Cleveland Clinic Dec. 3rd for another 13 day stay!!! This is all a little overwhelming so I am not sure exactly how to feel just yet. We are excited that all of the tests show the same spot without any questions. This journey has been such an experience (One I would prefer not to do again) not only have I learned so much about the brain and this amazing Clinic but that when you have to do something you are stronger than you think. I am so excited and extremely nervous for this next surgery. But I know its the right thing to do and the doctors here are amazing!!!!!! I am so happy we adventured out of our comfort zone and came to get a second opinion. This second opinion is going to change my babies life!!!! Thank you Cleveland Clinic!

Our family photos by the Amazing Jennie Lynn!!!

Our Little Family!!!!

http://www.jennielynnphotography.com/Blog/

Surgery Day

Well this day came so fast again! This time Bailey had the SEEG surgery on her left side. We checked into the Surgery Center at 5:30am and by 8:00am the doctors came and took her back. She was so brave and really just slept the whole time we were waiting. She had a long night last night, we stayed up until 11:00pm waiting for daddy to get here!  Bailey is such a daddy's girl and was so happy to see him. She told all of her nurse's yesterday that, "daddy was on a plane, and be here soon." He did get here but it was not easy. Jared's flight out of Salt Lake City was cancelled so he had to take a small  propeller plane to Denver and then a big jet to Cleveland. We were sad it was taking so long to see daddy, but to calm ourselves down we ordered a big plate of Nachos with lots of dips (Dips are Bailey's favorite) watched the Vikings and Buckiners game. Bailey loves football and Hockey. She will sit down and  watch sports with us all day.
I should probably back up, Yesterday they let us check out from the hospital for one night to get a good nights rest and let Bailey run around before the big Surgery. It was such a nice break but made it a little harder to come back in this morning. I kinda just wanted to take my baby and run!!!  But now here we are done with the Surgery and she is awake and doing well. She does not have any pain, she is eating her Chicken Noodle Soup and wanting to run around. She even made friends with her nurse Jason. Only Jason could help her or talk to her, it was so funny!!! Its now 9:00pm and we are slowly winding down for bedtime. Hopefully tomorrow we can get up to the monitoring unit and capture some seizures so we can go home!!!!

Waiting for Dr. Gonzalez

They give you these pagers so you can stay updated during the Surgery

Also they took her down for a CT and X-Ray and they show no bleeding. YAY!!!!! So thankful for Dr. Gonzalez and team for taking such great care of our Little Bailey Bug!!! 

Resting after Surgery

Daddys Small Plane from Utah to Denver
(He said it was not a fun Flight)

Things are going good!! Should have posted yesterday (Wednesday )

Yay for TODAY!!!!!!! Bailey had an Ictal Spect scheduled for Tuesday and Wednesday.  The idea of this test is to inject isotope at the onset of a seizure. Cerebral blood flow is known to increase during seizures at the problem area. For Ictal spect to truly work the injection has to be given before the end of the seizure. It is a hardy tricky test to complete and we were not successful the first day. But luckily Miss Bailey Started having seizures again last night and with a little sleep deprivation  it only took about 30mins and we were done!! It was a huge relief to have that test done and out of the way!!!! The nerve racking part about this test is that we only had  two hours to get a seizure and we only had two days to get it. Now that they have a scan with  with the seizure they will compare it to the baseline scan we did  on Tuesday, and hopefully be able to help pin point the location. I was talking to my mom this morning after all this good news she brought up a good point, no matter what the outcome of all this is at least we know we have done all of the testing and can feel confident with what they tell us. I am not sure if another resection is in her future or not but I am so happy we came to Cleveland and that we came back to finish the last few tests. I hope hope hope we can do a safe second resection and be done with hospitals for awhile, but if that is not the case we at least don't have to keep guessing. Well this has been a good day so far and I hope the good stuff keeps coming!!!!!
                                                           

                       Waking up from the test and starting to feel better after her big lunch!!!

Always being watched!!!

Happy Daddy is almost here!!!

Hi ho, hi ho it's back to Cleveland we GO!!!

We made it safe and sound! So far things have went much smoother than last time. For starters they got her IV in on the first try!!! Last stay it took 8 times. I have been so anxious over that silly IV. You really shouldn't loose sleep over things like that! But they got it and Bailey was so brave!!! It's amazing how brave she really is. She knows Exactly where we are and what they are going to do. They will come in with something and before they can say anything she is telling them what is going to happen.
The schedule this week is not great! Tomorrow we head down for another MEG Scan and then Tuesday and Wednesday we try for a Spec scan. After that she has her MRI Thursday and the SEEG surgery on Friday. That surgery is 5-6 hours long and they will put 10-20 pins in her head. It's not as complicated as the grids like she had before so I am happy about that. After Friday we just watch and wait for seizures and to see where they are coming from. I am hopeful that they can find the location and that it is in a safe area so we can remove it and get our baby healthy!!! The past few weeks Bailey has had so many good days it is hard to think of her as "sick". She is learning and catching up like never before. The only down side to that is, it's hard to make these decisions when she is doing so well. I keep asking the doctors over and over "this new pill I think it worked, do you think they  will be gone for good?" of course they never know! That is the worst part of this disease, it's unpredictable and nobody can tell you really why or where. It's always a guess, they are educated guesses but still a guess. They always tell us her seizures go into a "honeymoon" phase and will be back. Chances of finding a medication that will work or be that "miracle" drug is less than 5%. So that is why we are here and going forward. Just a few more tests and we will have our answers. We are so close!!!! I am going to say a little prayer that she will have a few safe seizures each day so we can get our answers. I will keep you posted. Good night!!

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.

I have the hardest time making a decision on what we are going to have for dinner. This making a decision about going to Cleveland, well I am stuck. So far this morning I have called the team. Margo, Dr. Filloux, Cleveland nurses and then another mother who has a son dealing with Epilepsy that had the same surgery as Bailey. Deep down I think we need to go, but I am not sure if there is much they can do... and is Bailey really having enough seizures right now to go. We were used to seizures all day long, now they come at night time and only about one a week during her awake times. Is this enough?? Can we do anything else that might work? Don't get me wrong. I am not sitting here saying all hope is lost, but I also don't want to keep running test for them to tell me the same thing. I have felt so panicked the last few weeks. Really ever since our last appt. with the Dr. I feel the reality of Bailey living with these seizures daily is something that we need to start embracing. What will life be like for Bailey? To see her everyday you don't think much is wrong. She walks, talks, runs and gets into a lot of trouble!! She is out of diapers too! Life is not all bad...I feel like things get better and better until I step out of my bubble into the real world and try to put Bailey is a class with her own peers. She is no where close to those kids. I hate that! I hate that today when she is only three, how is it going to feel when she is 10 or trying to do everything her little friends do. People say to never treat her different than your other kids or tell her she can't do something. But she is different and she can't do certain things. So how do I do that? Again I am panicked! We will figure this out, but its hard right now to take a deep breath and just relax. Hopefully some of my calls will be returned today and maybe they can point me to the next step.....or do we just wait until things get worse. Maybe having a few seizures at night is not all bad and I should feel lucky they are only at night and not when she is awake. 

Help

OK for the last month or so when the seizures started coming back, Bailey  started to get sleepy all day again. Some days are great and others she is out all day. Does anyone have any experience with this or suggestions on trying anything different? She is currently on three medications and Jared and I thought that was the problem. She does get sleepy after her medications and will usually fall asleep within 20 mins but then wake up an hour to two hours after and be fine. This last month it is a whole different thing. Its almost like something is going on inside that I can't see and she can't explain. Its so frustrating!!! Bailey will be just fine one minute then the next she can't keep her eyes open,she has a hard time communicating and has lost all coordination. Can anyone relate to this? I swear I am going crazy. Is something going on or not? That is always ALWAYS the question.  

On a much happier note, we took Bailey to her first water park tonight and she loved it. It was a fun family outing without issues. The water scares me with all my children but especially Bailey. Today she had a good day for the most part so that was a nice break. I want her to experience everything like all kids do. I really need to get over the fear of these seizures. Madison (my oldest) and I were talking today and she was concerned because we  went to laser tag  last night and the sign said something on long the lines of "If you have epilepsy you can not participate in this activity." It made her stop and think about how carefree her life is compared to what Bailey will deal with. I take for granted my health, I think most of us do. Its not until I see these little signs somewhere that I am reminded that it will be a little different for bug. I just signed her up for her first tumbling class. We start next Wednesday, I am so excited !! When Jared and I first saw this class Bailey was seizure free, at that time I thought I won't even bring it up to the teacher since things are going so well. Now here we are a week away and having issues like crazy. I called the teacher expecting the worst, but wow did she prove me wrong. It was the first time I had told someone about bugs problem without them hesitating or getting nervous. She was happy to have her and never paused. I hate the thought of always signing her up for something and saying "oh by the way, she has epilepsy". People are afraid of it, I was am afraid of it. Not the seizure but the aftermath. The fall, the sleepiness, the confusing look on her face like "what just happened"? I am so grateful for that teacher, I felt so great after that phone call. It proved to me that Bailey still can participate in most everything. It's days like this I wish I could bottle up how I feel and pull it out on the bad days. I need to remain focused on the positive. I need to get Bailey through this without feeling like she is "epilepsy". Does that makes sense. Well I best be off to bed since its 2am and Madison has an 8:20am dentist appt. and we are taking the kids back to seven peaks tomorrow night! 

This is what happens after we give her the medications.

Bailey playing dress up! She has a thing for only putting one arm through her shirts. I guess she likes the one shoulder style!! She is such a princess!!

She is using the Potty!!

I forgot the big news! Bailey is using the potty!! Like everything else with Bailey I thought we would have a fight on our hands when trying to get her to go, but nope she wanted to be a big girl and proved me wrong. This was just way to easy!!

                     I also wanted to add a picture of her second birthday. It was Lady Bug Theme. 

                                                                    Our little Bailey Bug

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!! :)

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!!

2 Weeks!

Today marks 2 WEEKS SEIZURE FREE! It is bitter sweet. Sweet because in the past two weeks she has caught up in almost everything!! It has been the most amazing two weeks. To not feel stressed or worried about having to create a bubble around her at all times waiting for those darn seizures. But here comes the bitter.... last night Jared and I decided that we want to move forward with going to Cleavland, so now we have to try and take her off her meds to make her have a seizure again. I don't know what we are thinking. Part of me thinks this is the miracle we have been waiting for and the other part says we have done this before it is just a matter of time and they will be back. So with that said I guess now I am hoping for one or two seizures just enough for the doctors to see in Cleveland and then back to seizure free. If only it worked like that!! It is crazy that she has been seizure free for two weeks, her medication levels are low, she has been sick and I have been giving her the morning meds at noon so she can get through her classes without falling asleep. So maybe the surgery worked, I guess we will soon find out. This whole being patient and waiting..... IS NOT FOR ME! I am the most impatient person I know.

We are starting toddlerl class!!

Yesterday we met with Bailey's teachers and decided to start her in the toddler class!! I am so excited. Right now she is in music class and loves it so it will be interesting to see if she can last through an hour and half class with out me. Bailey is doing great right now and I think it is a great time to start this. She is still having a seizure here and there throughout the day but overall she has improved!!! I will post pictures and an update next Tuesday with how it goes!

We are in!!

I just got the best call today! After a few weeks of phone calls and lots of paper work, our insurance approved us to go to Cleveland. But that is not the good news, not only did we get approved but they will pay our in net work benefits for the out of net work doctors!!! This saves us a lot of money! This is good news since it sounds like we will be there for one week in Feb. and then 2-3 weeks for her surgery. We also have to go back for a 6month post op and 1 year post op. So we will be traveling!!! I am so excited for Cleveland.  I also received our schedule for the week.

Day 1 Check in,psychiatric evaluation, MRI, and EEG.
Day 2 MEG Scan
Day 3 Pet Scan
Day 4 more monitoring with the EEG and talking with doctors about tests
Day 5 plan for the future and going home!!!

I can't wait to get this week over and find out what is next. I am nervous but so so relieved that at least this is all taken care of and approved. Now if I just could skip the plane ride I would be feeling better. I hate flying and then adding a crazy toddler that has a small seizure issue, well it will be interesting. The total trip will be about 7 hours. YIKES!! But we can do this. Just one more thing I have to keep telling myself will be okay. Wow that list is getting long.

We also had to increase Baileys meds tonight :( she is doing okay but not great. So hopefully we will get some good results. (but not to good we need her to have seizures for Cleveland)
Happy Wednesday Everyone!

Doing Good!

I just wanted to post an update about Baileys and her many medications. Jared and I decided to take a chance and go back down  to only three meds. It was a little crazy for a few days but we did it! We made the transition instead of 5 different pills or liquids a day we are back to three. I just love that Dr. Filloux gave us the option to go back down. Currently Bailey is on Depakote 2.5 pills a day, Vimpat 12mls a day and Oxcarbazepin 3 pills a day. Bailey is back to taking a normal 2 hour nap a day, and can stay awake once you give her the meds for at least an hour. We are making progress and I am so happy! She did have a seizure today :( It  was really hard on her and wiped her out, but before today she had made it 2 days again seizure free! I will take it!! Her speech is amazing the words that are coming out of her mouth just amaze me. Bailey is also climbing like a little monkey! It's so nice to just relax and not live in that fear day after day of watching and waiting for the next episode. I am So HAPPY!!!! What a great great way to start this great New Year! Happy 2012 And to many many more good days!! At this rate maybe we won't need that second surgery! FINGERS CROSSED!!

Hello 2012 This is Our YEAR!!!

Hello 2012 I am so excited to see you!! I have been having a hard time with this journey since her failed surgery in September, but I am back!! I don't think I had allowed myself to feel everything we were going through. Maybe it is because I didn't want to think about it or maybe I just did not have any time, but all of the sudden it hit me. I was sitting at the table with Jared and emotions were just flooding out, I was nervous to feel anything because sometimes it is just to hard to really cope with all that is going on. But after two nights of just letting my self have a pity party everything I had been bottling up finally came out and I took a big deep breath and I am ready to face whatever challenges come next!! Bailey needs us to be strong and we need to be strong for the hard decisions we have coming up again. I don't have any more time for these pity party sad days. I know deep down this is "Our Year" Cleveland is the best and they will help our little bug!! After all is said and done, and  after Cleveland we will at least know that we have tried everything. We have been to the best doctors and surgeons that our Country has to offer. If they say this is her life then we will accept that and move on and learn how to handle a child with a chronicle illness. I am starting to wrap my head around that. It has taken a year but I can at least say that out loud. Do I think that this is the life Bailey will always have? No, but I also want to be realistic and know that being seizure free for her is not likely. That makes me horribly sad, but she is strong and can handle it. These seizures have never changed her fighting personality. I thank god for giving me a baby with so much SPUNK!! It is amazing to see her fight these day after day with that sweet smile!! She has an uphill battle that will not be easy, but knowing Bailey  she never backs down and is always up to a challenge. Bailey never has listened to the word No and I don't see that changing anytime soon. So I know this is not going to slow her down. We received the paper work for Cleveland last week. It outlined all of her testing and schedules. Poor baby is in for a hard long exhausting week of tests, but she can do this! We fly out Feb. 5th (the super bowl) and come home the 10th. They are going to do the EEG, MEG, PET, MRI, surgical evaluation and physiological evaluation. At the end of that week we will know and schedule the second surgery if that is what they feel best for Bailey. I can't imagine doing those surgeries all over again but at the same time we know what to expect and know that we can get through it. Since the last surgery in Sept. she has had some of her worst days. Her worst day was when she had 85 seizures that we were aware of. It was heart breaking every day watching seizure after seizure and your baby going from running around talking to just laying in your arms crying. But I am so happy to say as of Dec. 23rd Bailey has been doing so much better!! We have still had some bad days but nothing compared to before. She even went three days seizure free!! THREE DAYS! I was bouncing off the walls happy. Bailey is improving on her speech and coordination as well. She put 5 words together! I was so proud of that sweet little sentence! She is using more and more words every day. And the longer she is seizure free (or more under control) the better she gets. She can use both hands to feed herself, walk, almost run without help and even climb the stairs. It is nice when we get these breaks and I can just sit back and watch her be a "normal" 2 year old. I love that little girl so much she makes me a proud mommy!! She is truly amazing!! Thank you everyone for your prayers, thoughts and help. We are blessed with amazing family and friends. Thank you again for donating and supporting our fundraiser, without that I am not sure if we would be able to go to Cleveland and get this amazing opportunity for Bailey. I also want to say a BIG THANK YOU to Industrial Solutions and Shamrock Plumbing for purchasing  our airfare for the two big trips to Cleveland. Karla and Kevin thank you so much!!  Prayers do work I saw it on Christmas eve and Christmas day. She was seizure free. We had a terrible day on the 23rd her seizures were every 2 mins non stop and with prayer and many thoughts she woke up seizure free for the first time since thanksgiving. We had a perfect Seizure Free Christmas the best gift anyone could have given. Please keep Bailey in your prayers and thoughts, she has a few hard months coming up and will need all the help she can get! We are so thankful for them. I hope everyone has a great 2012, I know we will!!! This is Bailey's Year to conquer these dang seizures!!!! Love The Bates!!