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!!