Fighting for Conner: May 2008

Conner's Story

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 is happy, he has more seizures. It's heartbreaking. The seizures affect his memory so he can't even remember the fun time he was having before the seizure hit. As a parent, I want 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 can't I?

About Conner

Conner is six years old and attends first grade. He loves to watch movies and jump on our friend's trampoline. His favorite junk food is french fries and chips...not a fan of sweets. Conner has one true love, and that is HERBIE THE LOVE BUG. He is a TRUE fanatic! He was introduced to the movie during a long hosptial stay about three years ago. Ever since that day, that is all he can talk about. He has all of the movies, posters, toys, etc. Every year he asks Santa for a REAL Herbie, and every year I have to tell him that it just won't fit in Santa's sleigh! Every year, Santa has to get more creative. All Conner wants is "Herbie stuff". I wonder what he'll bring this year!

About Us

Our little family begins in November of 1997. That is when Bryan and I were sealed for time and all eternity in the Boise LDS Temple. At the time we were living in Coeur d'Alene, Idaho, but then moved to Post Falls, then Hayden, and finally Ogden, Utah in October of 2000. Bryan attended Weber State, taking classes to prepare him for a career in Radiology. I was an optician at Mountain View Eye Center. During this time we were desperately trying to start a family. Five years after we got married, we decided to adopt. We put our papers in, and three weeks later we found out we were going to be the parents of a beautiful son, due in two months. When we met the birth family, we knew this was always God's plan. We fell in love with them instantly. Felt like we had always known them. A moment I'll always remember was looking at the beautiful birth mother and seeing her adorable pregnant tummy. I was amazed that my son was there with us, all snuggled up, listening to everything we were saying. It was a beautiful moment.
Two months later, while I was adjusting someone's glasses at work, I got the call. My son was here! Of course, I started crying immediately. I was finally a mommy, and Bryan a daddy. We had waited so long for this. So long.
The moment he was placed in my arms, I knew Conner was unlike any other child. It was instantly apparent that Conner was a very old spirit put on this earth to teach us all. I didn't know what or when, but I knew he was going to accomplish so much during his life.
As all of you know from reading Conner's story, Conner was never an easy baby. Bryan and I both knew that there was something wrong even before he was diagnosed with epilepsy. Mother's intuition is very real. Though I so wanted to be wrong.
When Conner was six weeks old, I got pregnant with our daughter Katie. Boy were we surprised. Nothing like going to an OB appointment one month pregnant and carrying a ten week old baby. It was great! You should have seen the snickers we were getting in that office. Unforgetable!
Katie is truly our little miracle. Not only because we tried so long to conceive, but because she survived. While in my last months of pregnancy with her, Conner was in the hospital, admitted in ICU several times a week. Of course I wouldn't leave his side, so I was forced to sleep in a rocking chair. No extra beds were aloud in the room. They just didn't fit. Conner cried most of the time. I even tried sleeping in the crib with him. He was hooked up to many machines and his cords wouldn't reach to my chair. Nothing like cramming an 8mo. pregnant mom and baby into a little crib. It was a sight!
Obviously, we had a lot of stresses, and it was taking it's toll on my body. I developed toxemia. When Katie was born, she wasn't breathing, her cord was the size of a pinky, and the placenta was shriveled and grey. I remember repeatedly asking if she was okay, and no one would answer me. When they ran her out of the room five minutes later, she still hadn't taken a breath. I laid there quietly in shock, thinking that my beautiful daughter was gone. At the time, Conner was a floor above me in the Peds Unit. Oh, and did I mention, this was Christmas Eve? They pumped me full of drugs and I fell asleep. Twelve hours later I was awaken by a nurse, telling me that my baby needed to eat. Katie was still here with us. Truly a Christmas miracle. I found out later from my OB doc that if she had been born one day later, she would have been gone even before I delivered her. Gives me chills even now just thinking back to that day. Katie was in the hospital five days, and then we took her home. She was a fighter. Thank goodness for that.
A lot of time has gone by. Lots of events have taken place in that time. Before Katie was born, we moved back to Hayden, Idaho. In August of 2005, right after finding out that we were expecting another child, my forty-eight year old mother had a massive stroke. She was in the hospital for a month. She couldn't walk, speak, or even feed herself. My mother was the only one working. My step-father was twenty-six years older and had been retired for quite sometime. My mother ran everything in that household, so after her stroke, I was forced to take over. I did everything from bills to sorting pills for my step-father. He had no idea how to even take care of himself, let alone someone with special needs. With no income other than his retirement, they lost everything. There vehicles were repossessed. We bought back their least expensive vehicle for them so my mom could get to therapy. My parents ended up divorcing a few months later. We bought there home and rented it out to my step-father. He had no money, no credit due to bankrupcy. As soon as he was able to build up his credit he was going to buy our house. My mother was living with her sister at the time. She eventually improved enough that she could walk (with a limp), use one of her hands, and even speak short sentences. She was able to move out into her own place. In March of 2006, our daughter Brooke was born. Here I was, three babies to take care of, one with special needs, I was still responsible for our finances, my parents' finances (separately), trying to get my mother disability, doctor's appointments, and everything else that goes along with normal life. Bryan was hard at work, attending school full-time to be an Xray Tech, and working full-time. He was doing all he could for our family. To make our situation even harder, my step-father ended up walking away from our house, leaving us with two mortgages and three mouths to feed. I didn't think we'd ever get through that time, but we did.
It is now May 2009 and a lot has changed; good and bad. As for the good, we sold our house and moved into our other house in the beginning of January. Bryan graduated at the end of January from the Radiography program. He is now a licensed Radiology Tech. Now the trick is finding him a job! Our 4th child, Brinley Madison, was born March 19th, 2009, and is doing great. Now for the bad...Conner was re-diagnosed in February with Lennox-Gastaut Syndrome, a very devastating disease that leaves 95% of people permanantly disabled, mentally and physically. Conner, in the past year, has lost a lot of function. Though he is six years old, he is only about a three year old level. He has lost the ability to get himself dressed, buckle himself in the car, and his speech is now very hard to understand. He even walks differently. He has lost the ability to play and though he is not Autistic, he has developed many Autistic tendencies and ticks. He whistles, taps, bangs, claps, etc. He has also developed many obsessive/compulsive behaviors including pulling out his toenails and fingernails. He is taking Keppra, Celontin, and Concerta to help with the ticks. We also just started him on Banzel; a brand new medication specifically made to treat Lennox-Gastaut patients. Conner is attending first grade in a special needs classroom and seems to love it. We are very fortunate to have such wonderful teachers and nurses caring for him.
Believe it or not, I thank my Father in Heaven for all of these trials and blessings. Don't get me wrong, I had and still have moments of complete dispare. I haven't always been grateful. But now, I am so much stronger. We are so much stronger now. Luckily, we have family and friends that have been with us through these wonderful times, and really horrible times. I know that with them, and God at our sides, we will be able to survive whatever life throws at us.