Sunday, December 4, 2011

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!!!!!!

2 comments:

  1. So glad you get to go and so quickly! I hope they have answers for you! You are a great mother and a perfect mother for Bailey. When the time is right you will know what to do for her! Listen to your heart! Keep us posted and please let me know how I can help!

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  2. Amanda, you amaze me with your positive attitude and constant smiles. I would never know from seeing you at preschool and talking to you a little bit here and there that you're going through so much. I feel so bad! Your last post was so sad and scary about how bad the seizures were getting and I am SO happy to hear the new medicine is working so well. I love feeling your excitement about being able to go to Cleaveland, how it feels like Disneyland. =) That's cute. I think about you guys so often and pray for you and Bailey and your family every day. I agree with Natalie, to just pray and follow your heart as you make these decisions. They are hard but it sounds like you're really doing a great job so far. I think you're such an amazing mom. Take care! Thanks for the updates!

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