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.