We look up at the sky every day, with hope that we'll see you flying by, in your very own Herbie cloud.

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Saturday, May 7, 2011

Our World...Shattered.

Friday morning, on May 6, 2011, Bryan and I went into Conner's room to get him up and ready for school, only to find him face down in his bed, not breathing. After a valiant effort by Bryan and medical staff, we were told that Conner had passed away. In just a blink of an eye, our world was turned upside down. Though we knew in our hearts that this day may come, no parent can ever be prepared for such horror.

Our hearts are broken. We never realized that pain like this existed here on earth.

Though we are experiencing indescribable pain right now, we are so very grateful to everyone who enriched Conner's life. He cherished every relationship he made here. We are also extremely grateful to all of Conner's doctors who did everything in their power to heal him. Because of their efforts, we were allowed to spend eight unforgetable years with our little boy.

Keep Conner's Spirit Alive!

Awareness is key in finding a cure for epilepsy. Please share this website with all of your family and friends. Please help us keep his spirit alive by supporting the Epilepsy Foundation, LGS Foundation, and Parker's Place, an amazing camp for families who have lost children.

Make a donation in Conner's name to Parker's Place by clicking the "DONATE" button below.

Parker's Place is an amazing camp for families who have lost a child.  We went just five weeks after Conner died, and it was truly a life-changing experience.  It gave us hope for the future.  Thank you Parker's Place!  If you'd like more information about this amazing camp, please visit:  www.parkersplace.org

Conner passed away May 6th, 2011. He fought courageously but was just too tired to go on. He has left his earthly body behind and is now free.

Conner was eight years old and attended second grade. He loved watching movies and tourmenting his sisters. His favorite junk food was chips...not much of a sweets man. Conner had one true love, and that is HERBIE THE LOVE BUG. He was a TRUE fanatic! He was introduced to the movie during a long hosptial stay about five years ago. Ever since that day, that is all he can talk about. He had all of the movies, posters, toys, etc. Every year he asked Santa for a REAL Herbie, and every year I have to tell him that it just wouldn't fit in Santa's sleigh!

Conner's Journey:

Our beautiful little boy was placed in our arms at one day old. We had tried over five years to have children before we decided to adopt. The first time I saw my little Conner, I knew I was in trouble. He stole my heart instantly. I couldn't imagine being able to love anyone more than I loved him. I was so grateful to have a beautiful healthy boy to call my own.  From the time we brought Conner home, he was never an easy baby. He slept only a few hours a day, he cried for hours on end, and he had bad acid reflux. At two months old, one day after his DTAP (pertusis) vaccination, I noticed a strange shaking movement in his hand. It terrified me. I contacted the doctor immediately and was told that it was normal for babies to make strange movements. At four months old, he did a repetitive head nod. I knew right away there was something very wrong. I took him into the doctor's office and was told that he might have a sleep disorder or epilepsy.  One horrible morning when Conner was six months old, we got our answer. I woke up to Conner making a gasping sound and convulsing in his crib. I saw him laying there foaming at the mouth. I had no idea what was going on. I called 911 and Conner was rushed to the emergency room. There he was put through many horrible and painful tests. The doctor started him on a seizure medication. We were terrified.Two weeks after his hospital visit, the pediatrician decided to take him off of the seizure meds. A child that has a seizure once doesn't necessarily mean that the child has epilepsy. It could be caused by an illness or some other unexplainable reason. We were thrilled and relieved at the news. Unfortunately, it was short-lived. Within just a few days, Conner had another seizure. This time it lasted about twenty minutes. From that day on, Conner was known as the adorable little boy with epilepsy.The first eight months were hell. Conner was diagnosed with myoclonic astatic epilepsy (MAE), otherwise known as Doose Syndrome. The doctors also said that he has medically refractory epilepsy which means he doesn't respond to any medications or other treatment.Conner seized almost everyday. The doctors decided Phenobarbital wasn't doing the trick so they put him on Keppra and Lamictal. He just kept getting worse. He was admitted into the ICU twenty-four times in that eight month period. His seizures increased in severity and duration. His longest seizure being almost three hours long. He just continued to get worse. Then one day, Conner's neurologist thought that the combination of drugs he was on could be making things worse. He told us that in rare cases, the combination of Keppra and Lemictal can worsen seizures. We took him off of the Lamictal, and sure enough he improved. He continued to have about sixty myoclonic jerks and absence stares a day, but the tonic-clonic seizures decreased from everyday to one every two weeks.Conner's seizure increased again. We tried many more drugs, the Ketogenic diet when Conner was 1 1/2, and then the VNS right after that. Unfortunately, after trying the diet for three months, we couldn't keep him into ketosis. The VNS has improved Conner's postictal period drastically, but other than that, it hasn't decreased duration or improved severity.Conner is now six years old. He has had many continual EEG's, MRI's, tried EVERY medication available, tried natural remedies, surgery, diets...you name it, we've tried it. A continual EEG a few years ago picked up 720 seizures (drops and myoclonic jerks) in a twelve hour period. His most recent continual EEG showed that even when Conner wasn't seizing, his brain waves were totally abnormal. His seizure patterns changed so regularly, we never knew what to expect. This little boy suffered so much during his short life. We were desperate for a miracle. Conner deserved a miracle! Conner was affected daily by this disorder. As you can see in the videos below, Conner couldn't even eat a bowl of soup by himself. His meds and seizure activity affected his sleeping, and he was awake a big portion of the night, which in turn made his seizures worse during the day. He attended second grade and absolutely loved it. His nurse rode the bus with him and was there with him at school. The problem was, if he has a big seizure during the day or clusters of little seizures, he was not allowed to go to school. You can imagine how many days he missed due to his seizure activity and how disappointed he got when he couldn't attend. As for activity, he had a hard time even walking in a grocery store. He loved to be outside but had more seizures because he was excited. When Conner was excited, his seizures got a lot worse. Most birthdays, Christmas mornings, and other fun times were usually cut short due to a big seizure. That's probably what saddens me the most. Anytime he was happy, he had more seizures. It was heartbreaking. The seizures affected his memory so he couldn't even remember the fun time he was having before the seizure hit. As a parent, I wanted to take his pain away. At two years old after suffering a lot of seizure activity, he walked over to me with his hand on his head and simply said "Hurt, Mommy take away hurt". That moment I will NEVER forget. I'm his mommy, and mommy's are supposed to be able to make them better. Why couldn't I?

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