Fighting for Conner

Our World...Shattered.

2011-05-07T00:04:00.000-07:00

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 turn 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 is not seizing, his brain waves are totally abnormal. His seizure patterns change so regularly, we never know what to expect. This little boy has been through so much in his short life. We are desperate for a miracle. Conner deserves a miracle! Conner is affected daily by this disorder. As you can see in the videos below, Conner can't even eat a bowl of soup by himself. His meds and seizure activity affects his sleeping, and he is awake a big portion of the night, which in turn makes his seizures worse during the day. He attends first grade and absolutely loves it. His nurse rides the bus with him and is there with him at school. The problem is, if he has a big seizure during the day or clusters of little seizures, he is not allowed to go to school. You can imagine how many days he misses due to his seizure activity and how disappointed he gets when he can't attend. As for activity, he has a hard time even walking in a grocery store. He loves to be outside but has more seizures because he's excited. When Conner is excited, his seizures get a lot worse. Most birthdays, Christmas mornings, and other fun times are 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?

No more Ketogenic diet!

2010-03-26T13:13:00.000-07:00

Well, we tried the diet for two months, and no improvements with seizures. His behavior has been quite a bit better, but his seizures are worse. Before the diet, he was having one to two big seizures a day. Now, he can go a few days without a seizure and then has an explosion of seizures. Most of the time it's about 7-9 big seizures in a day, but a few days ago, he had 19 in one day. Time for a change. Conner's neurologist said that the ketogenic diet doesn't seem to be helping, so we are in the process of weaning him off of it. I've been researching the GARD diet, and I think that's our next step!

Conner started the ketogenic diet...again!

2010-01-26T13:00:00.000-08:00

After about two and a half weeks in the hospital, Conner is now home. We started him on the ketogenic diet to try to help control his seizures. This is the second time. The first time he was only 1 1/2 years old. Hopefully, this time it will help!

Conner got his wish!

2009-06-17T23:20:00.000-07:00

Today was an amazing day for Conner. Wishing Star granted his wish, and that wish was to meet Herbie the Love Bug. Sarah and Ashley put in a lot of effort to make his wish come true. First, they sent us for an amazing dinner at the Hot Rod Cafe. After that, we headed over to the Post Falls Speedway to meet Herbie. Sarah and Ashley greeted Conner with tons of Herbie presents. After opening his presents, he got to meet and ride in Herbie. Herbie made Conner smile...the wish was a success!

The Scariest Day of My Life!

2009-05-03T11:35:00.000-07:00

It started out as every other Sunday starts out. We go to church, eat, take a nap, and then I load up the kids and take them to eat with their daddy at the hospital during his dinner break. We arrived and went and got our food, and then it happened. Conner went into a big seizure. He stopped breathing...this happens quite frequently. I started giving him rescue breaths, only this time, he didn't start breathing on his own. After six breaths, I yelled for help. At that point, he was a blackish grey color. Luckily there were three nurses just coming down for their breaks. They took over breathing and they couldn't get him going again. They called a CODE BLUE and the entire code team came down...close to thirty people. They surrounded Conner and I was pushed out of the way. All I could hear is yelling and things being thrown around. And then I heard complete silence, and during that silence, I heard a voice. A frantic voice that said, "I can't find his pulse...he doesn't have a pulse." His heart had stopped, and at that exact moment, my heart stopped too. All I could do was sit in silence and think of Conner, and what could have been, because in that very moment, my Conner was gone. I remembered him being placed in my arms at one day old and realizing that I was finally a mother. I remembered his first laugh, his first smile. I remembered the heartache of hearing the diagnosis of epilepsy. At that moment, I remembered everything and I dreamed of what could have been. But then, he was back. He was breathing on his own. A miracle had just taken place right in front of our eyes. I thought to myself, "What if we hadn't come to eat with Bryan?" If we would have been anywhere else, ANYWHERE ELSE, Conner wouldn't be alive today. When we first walked into the cafeteria there was only one person there. A little old man eating a bowl of soup. But when Conner had his seizure, there were three nurses to help. Then there was an entire code team to revive him. I know that Heavenly Father gave Conner the breath of life that day.

I added a song to Conner's playlist. Everytime I hear this song, I remember what happened that day and the emotions I felt. It is called "The Woman's Work".

Conner received a new diagnosis

2009-02-12T14:14:00.000-08:00

LENNOX-GASTAUT SYNDROME:

http://www.lgsfoundation.org/Lennox-Gastaut_Syndrome.php

Myoclonic Astatic Epilepsy

2008-05-22T17:40:00.000-07:00

http://www.ilae-epilepsy.org/ctf/myoclonic_astatic_child.html