Pills,liquids and more!

This week has been out of control! Bailey had her worst day ever with a total of 85 seizures that I know of. I am sure there were more during her sleep. It was horrible yesterday. My poor baby!! I think the problem right now is the medication. We are trying to make some changes in her cocktail and it always gets worse before it gets better when we do this.
So before the change this was the Meds list
    Topamax 3 pills in the morning and 3 pills at night.
    Trileptal 3.5 mls in the morning and 3.5 mls at night
    Vimpat 6mls in the morning and 6mls at night

When that stopped working and we lost control in Nov. we added a 4th medication
It was Clonazepam 1/2 pill in morning and 1/2 pill at night. This caused Bailey to be very upset and aggressive and still no seizure control. So this week we added a 5TH medication Depakote 1/2 pill at night.

This is the new schedule for Meds.
Morning 3.5 mls Trileptal
                6 mls Vimpat
Night
              3.5 mls Trileptal
                6mls Vimpat
                 1/2 pill Clonazepam
                1 pill Depakote
                  I pill Topamax
   Add the Lorazepam for emergency days

The first night Jared gave her all 5 meds it did not go well. Bailey was up all night throwing up and so so sick. The next day we gave her the Depakote at dinner and the rest of the meds at bedtime and it went  much better. But still no seizure control. So yesterday Thursday we added a 6TH medication. It was her emergency med. It only relieved her of seizures for an 1.5 hours. Today Doctor Filloux called (he calls everyday right now) to raise the Depakote to 2 pills a day. UGGG I hate giving Bailey so much medication. It is horrible to watch the seizures and it is horrible to watch her become of vegetable due to meds. Can I just scream for one minute...... I HATE THESE STUPID STUPID STUPID SEIZURES!!!!!!!!!!!!!!!!!!!!!!!! sorry this just sucks. I hope this new increase works. Otherwise the doctors wants us back up to primary children's hospital so they can increase the meds faster but while being monitored. I know that is not what we want so today I am saying a little prayer and these will just go away!! Can't wait for January and make some changes in Cleveland that will get us on the road to a normal seizure free life!!  I am trying to work, maintain the Christmas traditions. buy all of the Christmas gifts and be there every second for Bailey. I hate the thought of not being there for her after a seizure. She just needs us and I can't blame her. It would be scary to blank out so often and not be aware of your surroundings. I know its not realistic to think I can be there every second but I do try. Work just might have to wait. I can always try and go back in February.  I made so many plans when she had her good day and now we take it not day by day but at 10mins at a time. It is crazy how fast these seizures come and go. One minute we are running around laughing and dancing then the next minute she is in a cluster of them I am on the phone with the on call doctor and Jared is starting the car so we can head to the hospital.  Cant wait to say good by to these days.

More Surgery???

We went to see Dr. Kestle and Dr. Van Orman today about what is next for Miss Bailey. At the end of the discussion it was decided that more surgery would be the best option in trying to gain more control of these seizures. The problem with that is they really don't know where these seizures are coming from and to what extent they are attacking her left frontal and temporal lobe. During the first surgery they removed about a 1/4 of her frontal lobe. If we move forward to a second surgery they would place the grids on the  frontal lobe and between the right and left hemisphere. After the placement of the grids they would close her up and then we would wait for the seizures and collect the data to find more information about where. Unfortunately Baileys chance of rendering seizure free after the second surgery does not improve. She still has a 50% chance this will work and an 80% chance it will help control them with medication. We are also  looking into areas that may cause long term damage or   paralysis to her right arm and face. She may loose her speech but with therapy she can get that back. It's a hard decision and one that I don't want to have to make AGAIN! But I feel to give Bailey a chance at driving, marriage, children, a job, college education I need to be realistic and tell my self we don't have many other options at giving her a future. They told us today that if everything stays the same she will have learning problems, her IQ will drop, the chances of finding a job or everything else you look forward to in life will be extremely hard or not available to her. So again I try put myself in her shoes and think what would I want...? I think the loss of my right hand would be worth a life seizure free. The only draw back to this is that dang 50%. I don't know how I would feel if I had to have seizures all day and  no function in my right hand as well. I just don't know! GRRRRRR! Where is my crystal ball when I so desperately need it!!! After answering all of our questions our team did suggest a second opinion. Cleveland was the top on their list so I felt great about that. After our appt. Jared call Cleveland and the good news is... WE ARE IN!!!!  They are working on her case right now and getting all of her testing scheduled. It feels like we are going to Disneyland I am so excited!! I want to hear what they have to say and pray they can find something that will guide them to the spot that is causing my little bug so many bad days. Lori is our nurse we are working with and we even get her direct number! That is huge! She said she will call Monday or Tuesday with our appt. date. That date can not come soon enough!! Well the house work is calling my name and Korbin is down with the stomach flu. I am excited to feel this hope and excitement again. After everything that has happened the last few months things were not looking great for Bailey but today the sun is shining and their is HOPE a lot of HOPE!!! Thank you!!!!!!

November GOOD BYE!!!

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. 1^st she was having about 3-4 a day By November 9^th 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 22^nd 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. 1^st.” 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!!!

One month after Surgery

Today Oct. 20, 2011 marks her one month surgery anniversary! Bailey is recovering great! To look at my sweet baby you would never know that she just had two major brain surgeries 30 days ago. They say it is amazing how fast kids recover and they are not kidding. We still have a few bad days here and there but over all she is back to being herself . Her stitches are almost gone, I think I counted 5 left and where they shaved her head is now full of new hair!! It has been crazy since we have been home and I apologize for not blogging sooner. There are two reasons I have slacked on my blog. One is lack of time and when I do get time I am so exhausted I just fall asleep. The other big reason is that I was hoping to share with everyone amazing news and success that we have had with her seizures, but this is not the case. I have been so upset lately that I can not even bring myself to write or talk about it. Bailey was seizure free for 8 days after her surgery, then out of no where I am in her room with her playing and she has one. It was her normal seizure except it took her a few extra jerks to get into the full episode. I was devastated, however I did not throw myself to the floor just yet because the surgeons voice kept playing in my head "she can have seizures for the first month due to brain trauma." So I took a deep breath and held Bailey to she fell asleep then  laid her down and silently lost control.  Deep down I knew this was not a trauma seizure. After that day Bailey started having seizures every two days, then every other day and then every day sometimes multiple a day. I finally got the nerve to call the doctor, I was praying that he would tell me this was normal, all post opt surgery patients go through this, anything to make me feel better that we had just not made the wrong decision but no he could not tell me any of those things. All he could say is this is not what they had hoped for and that he is concerned. He told me to raise her vimpat to 2 more mls a day. This was horrible. Jared was out of town and Madison had just made student council for her class so I was trying to be brave and strong but I was so sick of every time we call a doctor or go see a doctor we get bad news. A year and a half of this and it is all bad news. Bailey still had all of her stitches in her head was still bruised and swollen and we are raising her medication because the damn surgery did not work!!! I am mad, upset, frustrated, SCARED and sad. I don't know what to do, where to go or how to fix this. I hate that. I just want Bailey to not live in  fear of when her next seizure is going to happen. There are so many people that have epilepsy that can control it with medication why can't we find the magic pill like so many others. We raised her medications a week ago today, since then she had a seizure Friday, uncontrollable crying on Saturday (a different type of seizure she has) and then nothing Monday  or Tuesday. Then last night she had a really bad seizure and tonight she had a smaller one. So with raising her medication we still can't get control. I am not sure where to go now but my plan in 6 months if it is not better we are packing our bags and heading to the epilepsy clinic in Cleavland. I can't sit here and watch her go through this anymore. I need answers and I will not settle that this is my babies life. There has to be something or someone that can help. I also have to keep telling my self this out loud so I will believe it. I am starting to loose that hope and I can't do that. I won't Do that!! We will get through this. Bailey will had a normal happy life. I am determined to give this to her.
       I will post again soon, we have many Doctor appts. coming up so I hope they can find the answers and I will have better news to report. I will also post some pictures from the hospital and how she is looks now.

Update: two days out from Surgery

Like I said in my last post I hope this post bring great news! And IT DOES!!! Our little girl is back and crazy just like before! We just sat at her crib all day Tuesday and Wednesday waiting for what happened at 7:00pm Wednesday night. After I finished writing my post on Tuesday morning around 4:30 I was putting the IPAD down when all of the sudden Bailey opened her eyes and said "Hi Daddy!" It was amazing! Was I little bummed it was not hi mommy of course but still I will take the Hi Daddy anytime. She gave me a smile and went back to sleep. She did not wake back up until around 6:50pm the next day. It was so sad and quiet around here Wednesday. We took turns holding her in her crib until she finally just snapped out of the medication  and surgery and was back. It was such an amazing feeling to see my precious baby smile, talk and look at me and know who I was still.

This is the post I wrote in the hospital but was not able to finish it. I just wanted to post it now so you can see what was happening then.

Surgery #2

Well surgery number 2 came a little faster than we had thought. Bailey was great and had 10 seizures on her grids by Monday afternoon. That was awesome news!! The bad or not so great news was where the seizures were coming from. We were told Bailey's seizures were between the frontal and temporal lobe but in fact when the grids were down and everything was mapped out it was almost behind her left eye. So everything was frontal. There was an area of her brain that did not have any grids on it because they did not predict this was the area that was a problem. So Monday night at 5:30 Jared and I were faced with three options. Now I had not planned for this and my decision making is horrible especially in a time like this when you are stressed, no sleep for about 7 days and no knowledge of what any of the brain does. So with that said there Jared and I sat listening to the specialist who had to bring in another specialist because he was so unsure of what the right answer was.
1st choice: take out a small area od Baileys frontal lobe where we think the seizures are starting.
2nd choice: do another surgery to place more grids on her frontal area that was in question and wait for more information and then have a third surgery.
3rd choice: remove the area in question plus the small area where we think is the start of her seizures.
Those were our options. No black and white answer!!!! No this is what will cure your little one!!! "no there is it, I found the bad spot". All words I had been praying for night after night. As if that was not hard enough our team of doctors who we LOVE all had a different idea of what they thought was the right thing to do. One said just go small, the other wanted to do more grids and the surgeon wanted to take the larger portion. We sat in our room for over an hour with our doctors talking about these options and when it was all said and done Jared and I made the decision to take the smaller and larger area and not place any more grids. The surgeon had told us that the success rate in the frontal lobe is not as great as in the temporal area. Also he said that in the past to see much success in this area you need to take out larger areas. So it was set at 730pm Monday night we made the decision to take out a large portion of our daughters BRAIN. I don't think one can even comprehend making a decision like that it was just a blur. I felt sick about what all this meant for Bailey. This area of the Brain they were removing is her personality, her reasoning, judgement, aggression and then we were looking at getting into her speech. The doctors tried to assure us that all of these things reroute themselves and that she should do great with very little side effects when it is all said and done. So that night we kissed our baby, listened to every word like it might be the last for awhile and at 11:30 feel asleep. Tuesday morning came fast and I don't think I will ever forget this day and the sick feeling I had giving my baby to the doctor so he can remove her frontal lobe. As I watched the doctor walk away with her and the OR doors slowly shut I lost the little composure I had left. I don't think I have ever cried so hard in my life. The thought of "oh my god what did we just do" ran through my head like crazy. There was no comfort at that moment and still 19 hours later i still feel the same way!! what did we do????? I hope come morning Bailey will be back to Bailey. And all this worry can be set aside for a moment. I would give anything to her mommy or daddy or even chewy! I know her speech will come. If not tomorrow maybe the next or we might just have to be patient (something I struggle with) but it will come back. And if anyone knows our family we do talk a lot so I have a feeling it will come back fast. I can't wait to be out of the ICU and back to our room, then to eat,poop, walk and go home!! Yeah home sounds so nice. Thank you to everyone who is praying,thinking of Bailey, and saying so many positive things. It does help to hear all of the support and to know we are not going through this alone. We also have amazing family. I don't think I would have been able to make these decisions or get through any of this without my mom, dad and sister!! I know Jared feels the same support from his family as well. They truly are so strong and have helped hold us together! I am positive that my next blog will be one with happy,amazing,great News!!! Oh and I am blogging from Phil's IPAD and It's 4:10am so it might no be perfect. Thanks for understanding!

Surgery!!

Well the day finally came and it was not easy. The week leading up to the surgery was one of the worst weeks I have ever experienced. Bailey stopped having a lot of seizures so Jared and I were so confused if we should go through with the surgery or wait and see how this all plays out. After days of phone calls to our team of doctors and a visit to the hospital for one last MRI and appt. with the surgeon and epilepsy specialist we made our decision continue to move forward with our plan. Our family was a mess Thursday night. I was snuggled up with Korbin and Madison on my bed just crying our eyes out as the kids kissed their sister good night and gave her the cards and pictures they made her for the big hospital stay. After staying up until 10:00 with all the kids we finally put them down and packed the bags.
The morning came fast and we had to be at the hospital at 5:45am. Bailey was the first surgery for Dr. Kestle and they were right on time. We gave our sweet baby a hug and a big kiss at 7:25am and at 1:25pm I was back with my princess. Bailey did amazing during the surgery, we were updated every hour and half on how she was doing and where they were in the surgery process. They had one little episode at the end of surgery where they think she had a seizure. Her heart rate went up and her blood pressure dropped. They gave her a little blood and sent her over for a CT scan to make sure everything was placed correctly. In the ICU Bailey was so brave. She woke up so unhappy and begging for me to hold her but we were able to calm her down and she slept. After her nice long nap our little bug was back and happy. She kept all of the nurses busy with her crazy throwing skills. Everything in the crib was thrown out over and over again. She LOVES that game. We spent the night in ICU and I actually got 4 hours of sleep. In the morning Bailey moved to her new room on the 2nd floor in the Neuroscience area. This is where we have stayed a few times before. They gave Bailey a great room and the best part we have a bathroom!!! The Surgeon has been in a few times each day to say hi to Miss Bailey and is amazed at how well she is doing. When he came in she said look ouchy and pointed to the band aid on her foot from one of her IV's and he started to laugh. It must be great to be 2 and think your ouchy is on your foot and not the big wrap on your head that has wires coming from every which way. I love that baby. She is amazing, brave, happy and so darn cute! The only thing right now that looks a  little out of whack is her eye. We have lost her little left eye and it is so sad to see. She just keeps rubbing it but never crys about it. It truly is amazing how well she is doing. When she is awake she is busy and happy with no idea they just cut into her brain. So far she has had two seizures captured on the EEG. They look great, the quality is amazing and our Dr. Filloux comes in every time and tells Jared and I where they are and how impressed he is with Dr. Keslte and what a great job he did in the placement of the grid. We will be here until Friday waiting for more seizures and playing  with our little bug for anyone that wants to come see us. She looks a bit swollen but other than that she is just plain Bailey with a cute white hat!! Love this little girl I just wish I was as brave as she was!!!!!

The Fundraiser!!

The fundraiser was a hit!!!! We made almost $13,000.00 for our little bug!! Thank you to everyone who came out and supported Bailey! I hope everyone had fun! Jared and I were so touched. Bailey will be able to have a great rehabilitation program due to the money raised so we can get her up and back on her feet and living a life free of seizures! I want to also thank everyone who donated and could not make it to the fundraiser. With every ones help it was such a great success. It is our goal to rehabilitate Bailey and if there is any money left over to donate it to the next family, like us that needs a little extra help. Through this journey we have met so many people that are going through or have gone through what we are experiencing now. It has been an extremely hard year and a half, I am looking forward to getting through this time in our life and moving forward in a positive direction. I am so scarred for what is going to happen after Sept. 16, I have not made one plan because I don't know what life will be like at that point. The doctors don't know what our baby's life will be like. We pray for a miracle of a seizure free life with no Medications and no side effects from the surgery. Reality is that we may loose her speech, she is going to forever have a scar on half of her head and down to her ear, and she most likely will be on one medication the rest of her life. But with all of that said I would take all of that to just have Bailey make it one month seizure free!!!
I keep trying to stay positive and people tell me all of the time how brave and strong I am. I don't really see it that way. Inside I am freaking out, ready to loose it any minute and to be honest I am not sure how the two weeks in the hospital are going to go. I know I have my emergency drugs just in case it gets to hard, I also have the most amazing husband anyone could ask for. He is so calm and patient with me.  I have cried on his shoulder so many times and each time he just reassures me that everything will be okay. I know he is scarred and hurting inside but he would never let me know. I laugh and tell him he better lock me in the house Thursday night because if he doesn't I am going to run away with Bailey to Mexico and sit on a beach where no one can touch her. I will post updates while we are in the hospital and Baileys progress. I don't ask this a lot but if you could please keep our Bug in your prayers for the next few weeks we would really appreciate it. Everything is going to work out I know it. GOD please just get me through the next month and a half!!

Surgery Update!!

They moved Baileys surgery up to the 16th of Sept. for the first one and the 23rd of Sept. for the 2nd one. I think it will be better since they will be on a Friday instead of a Tuesday but still the 23rd is my moms birthday and that is not a great gift!! I can not wait to put this whole thing behind us and get our little Bailey back and moving in the right direction. Also for anyone that would like to come and see us I will be posting updates on how she is doing and which room we are in during the stay. I know Bailey would love to see familiar faces during her stay and so would Jared and I. It gets a little lonely up there and this time we will be there for 2 weeks instead of just the normal 2-3days. Thank you again to all of our friends, family, co-workers, and bosses for supporting us and helping our family out during this time. We have been so touched by the love everyone and shown us. I am always being asked "what can I do to help?"" What do you need?" "How are you?" I am not sure if we would be able to make this choice and do what is best for our little baby with out all of the encouragement we have had!!

Finally and update!

I have been so bad about updating  my blog the last few weeks. It seems like I have so much going on with the fundraiser that I forget about everything else!! Well the kids are swimming with Jared tonight, (yes he decided to take all of them to hims moms swimming pool) so that leaves me with a quiet house and time to think. For the most part things have been going really well with Bailey. The doctor appts. have slowed down, the seizures and have slowed down and she seems to be adjusting well to the new medications. She is still on three medications and at high doses of all of them so that really takes her out until after her nap. But around 3:00pm every day you better look out because  she is on a mission to get into everything. I forgot about the terrible two's and since she is only having 2 to 3 seizures a day now she is acting more and more like a toddler everyday.  I am so thankful that despite everything  Bailey has to go through on a daily basis you would never know she had anything wrong if you saw her from 3:00-6:00 everyday. I am happy for those 3 hours when she can just be a normal child. The last two weeks have been great, Bailey even made it two days without one seizure. I always get my hopes up that we have found the magic cocktail and that we have our baby back but then days like yesterday and today bring me back to the reality of this awful world she lives in with epilepsy.
I am creating this slide show for her fundraiser night and I found this poem that just made me loose it and yet brought me so much peace as well. I thought I would share it with you.

The Child, Yet Unborn

The Child, yet unborn,
spoke with the Father,
"Lord, how will I survive on the world?
I will not be like other children,
My walk may be slower,
My speech hard to understand,
I may look different.
What is to become of me?
The Lord replied to the child"My precious one, have no fear,
I will give you exceptional parents.
They will love you because you are special,
Not in spite of it.
Though your path through life
will be difficult,
Your reward will be greater.
You have been blessed with a
special ability to love,
And those whose lives you touch will
Be blessed because you are special."
(author unknown)

I think about this poem so much and how true it is. Bailey has taught me so much about patience, unconditional love, what life is like for those who have special situations that may draw attention when they are out in public. I watch my two older kids with their sister and how they handle themselves when she is having a seizure. We laugh because I sometimes think Korbin has no idea that his sister is any diffident. He just looks at her and says "oh Bailey is having a seizure mom" and then I run and grab her and he goes on playing like nothing is wrong. Our oldest Madison is so sweet with her baby sis. She is so concerned for her and each time she has a seizure I see how scared she gets. The very first time we went to the hospital with Bailey in May 2010, Jared's mom was at our home watching the kids while we were at Primary Children's. It was our first night there and I received the most frantic call from Madison. She was hysterically crying and I could not console her to even hear what was wrong. Finally after about 10mins of listening to her cry I figured out that our dog Addie, had a seizure while Madison was putting her to bed. (YES OUR DOG HAS SEIZURES TOO!!) Addies seizures were much worse than Bailey's seizures at that time, the dog would seize for several minutes and just cry after and not be able to walk or even stand up. So here is my sweet Madison watching her dog seize and having her parents gone with her baby sis in the hospital with seizures. I hung up the phone with her and just cried and cried. I felt so torn I knew Madison needed me that night to reassure her that everything was going to be okay and yet the baby needed me to hold her and reassure her too. I called Madison back and she was so brave and said "I am okay mom, stay with Bailey!"  ' Now after watching Bailey have hundreds of seizures I see Madison teaching her friends what to do if Bailey has one and to not be scarred and explaining to them why her sister is so special. I love that. Bailey has taught us all so much about what we all take for granted and that is being happy, healthy and normal!!
Well I will post again soon and can't wait for the fundraiser! It is going to be so much fun and hopefully I can pull it together ha ha.

Bailey's Fundraiser Pics

Please check out www.jennielynnphotography.com to see Bailey's Fundraiser photos. Jennie was so kind to donate her time and amazing skills to take the most beautiful pictures of Bailey for her big night. I am so excited to share these photos with everyone. Thank you Jennie for your time and supporting our Little Bailey.

Fundraiser Info

A Night for Bailey!!!

Bailey was diagnosed with Epilepsy at 10months old and has been suffering with daily seizures since. Her family and friends are throwing a fundraise to help out with her medical expenses and her Epilepsy brain surgery that is scheduled for Sept. 20^th and Sept. 27^th 2011. 

The event will be held at Noah’s Event Center in South Jordan on August 24^th 2011.

Tickets for the event are 25.00 a person and include dinner, casino chips, one raffle ticket and one drink ticket.

Dinner will be served from 6:00pm until 7:00

        Assorted Breads and rolls, Baby green raspberry salad, Pork tenderloin with fresh mango salsa, Stuffed Roman chicken, Pasta primavera and dessert buffet.

Casino night will begin at 7:00pm

        Games played that night

                Black Jack, Texas hold’em, roulette, let it ride, and Craps

(Not played with real money, 1000.00 chips will be handed out at registration table. All chips will be turned in at the end of the evening for raffle tickets.)

Raffle tickets will be sold prior to the event and at the event for 1.00 each.

        Top baskets include

                Jazz basket with set of tickets and signed basketball.

                University of Utah Basket with 2 sets of football tickets and Ute memorabilia

        Prizes and baskets from local business. More information to follow.

       

Bar provided by Skyy Entertainment

        Wine, beer, and sodas              

To purchase your tickets go to http://www.baileysjourney.org/

How am I going to do this?

I did what I tell myself never to do. I GOOGLED!!!! My mom always say just google something if you have a question so I did, and now I wish I could ungoogle! I think most of you know that Jared and I have decided to go through with the surgery. So I googled what to expect with Brian Surgery. I was browsing sites when I found Moms of Epileptic seizure disorder. So many brave parents have posted what their children have went through and it is just horrible. I just can't imagine putting Bailey through this. I don't know how I am going to get through this. I am trying to be strong, really strong but everything I keep telling my self on why we are doing this is just not working right now. I had a really good week last week of holding it together but last night I just started to have a panic attack. We have spoke with the doctors and they want us to schedule for Sept. and we will have a firm date by July 14th. Again I don't know how I am going to do this. That is only 2 months away! Just since June 29th Bailey has had two medication increases, 5 doctor appts. and 103 seizures. She has these really awful cluster seizures now where she can have 12 seizures in about 2 mins. and never really comes out of one before the next one starts. So I do understand that this surgery needs to happen but when we are having a really cute moment where Bailey can finally be herself (after nap time) I just look at her and she is  perfect and I don't want to change that.
          
                     I just have to say one funny thing that happened through this crazy week. Bailey had given me a black nose with a water bottle that she threw, and when took I her in to get her Immunizations our sweet new Pediatrician looked at me and said Is everything okay at home? I looked at him and was puzzled why he would even ask this, and then realized that my face was black and blue. I just started laughing!!

The doctors Appt.

We met with Dr. Filloux (Bailey's Neurologist) today about going further with surgery and her PET scan results. The good news is the PET scan showed what the other tests have shown that the seizure activity is all in the same area. The bad news is we still do not have an exact location. Dr. Filloux feels that we are at a point that we should go further with the surgery since we have tried so many medications without success. So now we are faced with the challenge, getting a second opinion  at the Cleveland Clinic or trust we are in good hands and schedule the surgery. If we went out of state  we would most likely have to stay there for the surgery. I am just not sure how I feel about leaving for a month and trusting doctors I have never met, on the other hand I have heard so many great things about the Cleveland Clinic and their team of specialist. I wish I had a crystal ball that could answer so many questions for me.  I do feel a sense of urgency in making a decision due to the fact that Bailey is just getting worse. It is so hard to see her seize day after day and feel so helpless. Jared and I feel strongly that the surgery is what is best for Bailey at this time. The odds this surgery will work and make her 100% seizure free are about 50-60%. Not great but the odds that she will have better seizure control are much higher. They say that the surgery can make the medication work better so even if we can gain control with medication and she has a seizure a week it sure beats the 10 a day she is having now. We are working on setting up a fundraiser for Bailey's medical expenses and rehabilitation after the surgery. If you would like to help in anyway either with your time or a donation of any kind please contact us at amanda_bates@comcast.net or Jared_bates@comcast.net

What a day!!

I am really not sure how to begin this since it has been 14 months since they day we were diagnosed.  Some days I want to go back to that first hospital stay and feel that feeling again of thinking everything was going to be okay. Kids out grow this! Or better she will outgrow this or is this even a seizure??  Today June 23 2011 I woke up at 5:00am took Bailey to get PET scan at the hospital came home at 11:00am held her for about 3 hours since she was to drugged to walk and then finally when I thought it was safe to put her  down she goes into a seizure and bites her finger so hard she punctures the skin and we end up in the insta care getting x-rays to see if it is broken. Now not every day is this bad but this past week I am not sure how we are getting through it. Just this week alone since Sunday Bailey has had 43 seizures and they are not like they used to be. They are more violent and really take her down. She is starting to get hurt more and we really have to watch her at all times.  Bailey is currently on three medications Vimpat 5mls twice daily, oxcarbazepin 3.5 mls twice daily and the new one we started tonight is topiramate 2 pills a day.  She is at the max on 2 of these meds and we are going to be there soon with the new one. But out of all this craziness this  week came something great I got in touch with a  wonderful woman name Margo who literally has changed my thinking about this surgery and helped me get the ball moving on so many possibilities  to help Bailey.

Before I go further I need to  go back to  the day that really put me in a funk.  JUNE  9^TH 2011  it started great and really I did not have to many bad feelings about this appt. WE were supposed to meet the Nero surgeon and the epilepsy specialist. For the past 3 months we had been working with a team of 8 doctors to see if Bailey was a candidate for epilepsy surgery. So finally after all of the testing we were at the Surgeons office to have it put all together for us. Jared and I walked into that appt. thinking this was an option but not reality YET!! Wow we were wrong. The specialist told us our Daughter had a 1% chance to outgrow her seizures, a 5% chance we will find the magic medication and a 60% chance the surgery would work. I think I just went numb and I started to cry. All along I had never let myself go to that what if we can’t stop these how will Baileys life be after I can’t hold her anymore and protect her from these like I do now. How will the kids at school react to her when she falls to the ground shaking? Will she be able to go school? Drive? And now it was all there in front of me I was so scarred for my baby my precious little baby. After that shock we get hit with another not only will she need surgery but they can’t seem to find the problem area so they need to operate twice! TWICE!!!! The first one they will remove her skull place the electrodes onto the brain, place the skull back in place and wake her up to have seizures. We will stay in the hospital for at least one week being monitored while they map the problem area. After this week we go back into surgery where they remove a larger portion of her left side of the brain! At this point I was done I just wanted to run and hide and thought how will I ever be able to make a decision. That was until Margo who changed my thoughts on this surgery. She told me we were lucky to have this option and that in most cases it does work out for the best.  So for now until we meet with more doctors and get the results from the pet scan I am going with that. We are lucky to have this sweet little girl who is so spunky despite all of these seizures and wonderful supportive family!

I will post soon about all of our new adventures. We are looking into getting a second opinion, trying to put together a fundraiser and have a few more doctor visits to go before the big decision.  We meet with our neurologist Monday so hopefully we have good news from the PET scan.