Baby Steps

Piper's Story

Piper's unique story begins on April 1, 2011. We went to the doctor to find out the sex of the baby and learned we were having a girl! We were thrilled and the following ten minutes we spent just enjoying the news. The doctor came in and said she was studying the ultrasound and had a concern she wanted to discuss with us. We quickly went from elated to absolutely devastated. She told us that she found an abnormality in her brain and told us we needed to see the high risk specialists to find out what was going on. We left the doctors office in tears and just cried for hours.

We had to wait for a couple weeks to get into the high risk doctor. These were some of the longest days filled with worry and stress. We finally saw the doctor and they were not sure what the abnormality was and told us it could be three things but they wouldn't know until she was bigger. We spent hours researching all of the possible outcomes and learning as much as possible. We prayed all the time and asked God to help us be strong. We finally talked to a doctor who was completely convinced it was Agenesis of the Corpus Callosum. We had prayed and hoped that this wasn't the case because out of the three possible problems this was by far the most severe. He suggested we do a MRI so they could get a better look at her brain. At 29 weeks pregnant I had a MRI done and we found out that she indeed had complete Agenesis of the Corpus Callosum. (The corpus callosum is the band of white fiber that connects the two hemispheres of the brain) We asked what to expect and they said it was a "time will tell" situation and we will have to wait and see. So we left the doctors office in a daze. We didn't know what to think or how to make sense of her diagnosis. We spent the entire day crying and praying for strength. The next day Justin left for a week long mission trip to Honduras. It was a really hard time for both of us but we were able to be alone and grieve, think and pray. We he got home we both had used our time alone to mentally and emotionally prepare for the next steps.

The rest of my pregnancy was uncomplicated and I was induced on August 18, 2011. After a long and intense labor Piper was just not willing to come out on her own and it was becoming dangerous. I had an emergency C-section and we met Piper at 4:06 am August 19. She was perfect in every way.  She passed her tests and did not have to go to the NICU as we expected. We saw the neurologist in the hospital and he said she looked great and not to schedule an appointment unless we had concerns. We were so happy and couldn't believe that she seemed so healthy and normal. Little did we know life would be flipped upside down in three short months.

Piper's first 2.5 months of her life were amazing. She was hitting all the developmental milestones and was happy and smiling. I will never forget the joy of this time of our lives. About a week before her 3 month mark, the unthinkable happened. Piper had her first seizure. I will never forget the way she looked and how terrified I was. Heartbreaking is an understatement. I don't think we really knew what was about to happen to our precious little girl. We rushed to the emergency room and they admitted us to the Children's hospital in Chattanooga. She was given a seizure medication and we stayed overnight. They let us go the next day because she had stopped having seizures. Once we got home she had three more seizures. We ended up back in the ER and began a very long stay in the hospital. After extensive tests, the doctors were unable to give us a definite diagnosis. We spent almost a month in the hospital and celebrated Piper's first thanksgiving in a place we never expected. We became concerned with the amount of knowledge our doctors were able to provide for us and made the descion to go to a hospital in a bigger city for a second opinion. We traveled to Atlanta for an appointment with an epileptologist at Children's Hospital of Atlanta. Once he saw Piper and learned that she was having 200+ spasms a day he told us she needed to be admitted. So with no extra clothes and not expecting to stay we checked her in to the hospital immediately. They doctors repeated many of the tests we had already done but were much more detailed. Within a few hours they told us that her seizure activity was infantile spasms. We were already convinced this was the case but finally had confirmation. She now had two of the three markers of a rare genetic disorder called Aicardi syndrome. Her eyes were examined by an ophthalmologist to determine if she had the third marker, retinal lacunae. After the exam, we learned that she did in fact have lacunae and was diagnosed with Aicardi syndrome. Our lives were changed forever.

At this point, Piper had tried three medications and none were helping at all. She was lethargic, zombie-like and she stopped smiling. She was having more seizures than ever, at one point she had 300+ seizures in six hours. She had a cluster every hour. She didn't sleep, we didn't sleep. It was the low point in all of our lives. Her first Christmas is one we don't think about very often. We prayed for a miracle. In January of 2012 we started a special diet called the Ketogenic diet in hopes of better seizure control. We did not see huge improvements and once again the side effects were terrible. She gained a lot of weight, stopped playing and just looked very unhealthy. In February we decided it was time to try a medication we were very afraid of . Sabril had been a "miracle" drug to many children suffering from infantile spasms. The side effects were vision loss. We came to the conclusion that seizures trumped vision loss and we started the medication. This is the only pharmaceutical medication that showed any signs of seizure control. It reduced her seizures by 50%. Although she was still have around 100 spasms a day it was a huge improvement. She began playing more and sleeping for longer stretches. We were happy she was doing better but still wanted to see our child seizure free. Over the next 6 months we tried various other medications with no luck and weaned ones that weren't' working. The first year was the hardest of our lives. Or so we thought.

When Piper turned one she was still having roughly 100 spasms a day in 5-6 clusters. We moved back to Knoxville to be closer to family. We prayed for a neurologist that could finally give us some direction. We were sick of making all of the decisions ourselves. Once we met with our new neurologist he suggested more medications to try. We tried many and once again nothing worked. The only thing we noticed were terrible side effects again. She was enrolled in the early intervention program and we did physical, occupational, speech and vision therapy once a week. She could barely participate most of the time. The medication and seizures wore her out so much that she would have about 10 good minutes in therapy. It was overwhelming for both of us. It became obvious that unless she had seizure control she would never be able to progress. From August 2012-May 2013 we tried every single medication our doctor recommenced with no positive results. He told us we had one option left and it was a medication with a high risk of liver failure. He cautioned us on giving it to her since she was so young. He told us he treated a patient that DIED of liver failure while taking it. It became clear that we were supposed to just "accept" her seizures and wait until she was older to try this treatment. Luckily we don't give up easily and we began researching other options.

In the spring of 2013 we came across a compelling story about a family in Colorado whose daughter was suffering from intractable epilepsy and they had tried everything to save her life. She has Dravet syndrome which causes detrimental seizures that don't respond to medication. They also were desperate for anything that could save their daughter. They had found something that worked. Cannabis. In Colorado medical marijuana is legal and a specific strain was working wonders for their daughter Charlotte. Charlotte's parents had found a group of brothers growing  strain of marijuana with low THC (the only psychoactive component in the plant) and high in CBD (cannabidiol, another component in the plant). After the first does, Charlotte went a week without having a seizure. The previous week she had 300. She went from not walking, talking and so severe that her mother had to resuscitate her on more than one occasion to nearly seizure free and thriving. The results were absolutely amazing. 

One week in May 2013 while Justin was traveling, Piper had one of the worst weeks I had seen in a while. I was so frustrated, angry and desperate for something to change. I called Justin and told him I was willing to pack up our van and drive to Colorado the next day. When he realized I wasn't kidding we starting talking about what it would take to make that possible. We decided that this was our last chance to give Piper any chance at a better life. We had trouble deciding when to go. The next week I found out I was pregnant. To us it was sign from God saying go now, while you are still physically able to do what it will take to care for Piper without Justin. After many days of planning, researching and praying we set the date to move. On August 1, 2013 Piper, her mom and grandfather drove 1300 miles across the country to their new home in Denver, CO. Justin stayed in Knoxville to continue working and preparing for when he could move. We settled in to our new home and did all of the paperwork to obtain our medical marijuana red card. We started the high CBD oil deemed Charlotte's web on October 24, 2013. So far we have seen results and are hopeful for the future for the first time in 2 years.

We have now lived in Colorado for almost 2 years and Piper is off of all pharmacuetical seizure medications and is only using cannabis oil and a VNS for seizure control. She is doing really well and is the healthiest she has ever been!