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.