For those of you that don't know this is our precious little boy, Remington. At just  2 months old we started noticing some odd behavior from Remy. He would have spells where his legs would jerk up into his stomach or his wrist or shoulder started twitching uncontrollably. We took him to his pediatrician on two separate occasions and we were told he's healthy and probably just a little more twitchy then some babies. One night while walking the floor with Remy he went stiff in my arms, and his eyes  fixed to the right. We immediately rushed him to the ER, were we were told it was probably acid reflux and not a seizure which is what I suspected. The next day we took him back to our pediatrician and finally someone listened to us and told us to make an appointment with neurology at Children's hospital in Pittsburgh. Before I had time to call Children's Remy had another episode, this one was entire body spasms and non-stop eye blinking, at this point I knew without a doubt  that my tiny baby was having a seizure. I called an ambulance and told them to take us to Children's Hospital.
         We got to Children's and my baby was put through every test imaginable. They took countless tubes of blood, they did a lumbar puncture  a fast MRI, an an EKG. We were admitted and Remy was hooked up to a video EEG. The EEG showed that Remy was having seizures and that his brain wave pattern was abnormal all the time.  We were sent home on Keppra and for 5 wonderful days Remy was seizure free.  However the seizures came back. We were admitted 2 more times trying to get his seizures under control and with each new medicine started it seemed like his seizures increased. He was on 4 different seizure medication at this point and he was having anywhere from 30-60 seizures a day. We were admitted 3 more times Remy was taken off of  1 medicine and put on Phenobarbital and finally it seemed like something was working.  He stopped clustering and was down to around 20 seizures a day; still too many for our liking.  Unfortunately this only lasted for a couple days.
       When we got Remy home we noticed that he wasn't acting right. He would scream for hours non-stop and he stopped smiling and laughing completely.  We called his neurologist and we were admitted again. Remy was diagnosed with infantile spasms, on top of his Focal Epelipsy.  He was started on an ACTH shot that I had to give him twice a day. The shot worked wonders and we got our happy little boy back. Unfortunately the shot can only be given for a month and the day we stopped it Remy began having seizures again. At this point the Drs at Children's told me they were running out of treatment options. They started Remy 2 more medications to treat his seizures and spasms and was on a total of 6 different medications at this point.  For those of you that don't know seizure medications are sedatives and Remy was beyond the max dose on every medication he was on and still having multiple seizures and spasms a day. He was so sedated he barely ever woke up and he got to the point that when I would give him his medicine he would choke because he was to sedated to swallow properly. Because of this choking Remy ended up with pneumonia and it was at this point I decided we needed to go see another Dr.
       We found Nationwide Children's Hospital in Columbus ohio and saw that they were known not only for their treatment of Epelipsy but also their treatment of infantile spasms.  We made an appointment and Remy was given another Video EEG ( this was the 9th EEG hes had in his short 9 months on this earth), a  MRI and a PET scan. The Dr's have looked over all of his tests and they believe the best course for Remy is a Functional Hemisherectomy. This is a procedure where they remove the entire left hemisphere of Remy's brain. They found out that Remy's entire left side of his brain didn't form correctly and because of this it is holding back the right side of his brain. 
     With such extensive surgery looming we are going to be making a lot of trips to Columbus Ohio and back and with hotels, gas and food the costs are really adding up. We have an appointment coming up in 2 weeks to discuss the  surgery and run some more tests.  Any amount you can spare would help so much. Please keep us in your prayers during this difficult time in our life.