Our sweet Lainey Jean was born on May 16, 2013 via c-section. We had tried for such a long time to have another child and we were beyond elated to find out we were expecting. She would be joining our 16 year old son and would compete our little family. We were all so excited to meet our little pink bundle! Everything was moving along with no complications until my 20 week ultrasound and a slight curve in her spine was found. We began seeing a perinatal doctor and monitoring our sweet girl.
I went into labor at 33 weeks and luckily they were able to stop it and she stayed for a few more weeks before her final arrival at 36 weeks. We were fully prepared to have a very careful delivery to make sure her back was ok but what came next completely caught us off guard. I was able to see her for about 5 minutes and then I was taken to my room. I waited a long 7 hours before finally having my baby in my arms.
That night would be the only moment that we had no worries with our sweet girl. I remember posting her picture and telling everyone how perfect and healthy our girl was. It was short lived. The next morning the doctor told us that her eye that I thought was just swollen from the delivery had never fully developed and the eye doctor was coming to examine her. A few minutes later we were told she wouldn’t be coming back to our room but had been sent to NICU. In a few short moments our world shattered. My husband was told that our daughter would never see him and that she was about to go through tests from neurology, cardiology, genetics, blood work, ultrasounds, and an MRI. It was too much to even begin to comprehend. We lived a long 9 days in NICU before being released. However we left with the assurance that it was just her eye that we were dealing with.
We moved on after the initial shock and just began to enjoy our baby. I started to notice that Lainey would jerk at certain times. I addressed it several times and she was treated for reflux and infant tremors that they contributed to premature delivery. I noticed that it was getting worse and her entire body started to jerk. We were referred to a neurologist but were told it would be at least 2-3 months. The episodes became so bad one day that we were sent to Scottish Rite and immediately admitted. A lot of that time was a blur for me. So many tests again and the uncertainty was horrible. I remember waiting on the results from the doctor and praying to god that this was just a bad dream.
The doctor came in and we learned that Lainey was having a form of seizures called infantile spasms. They are a catastrophic form of seizures that can be life altering. Along with this diagnosis came the clinical diagnosis of Aicardi syndrome. In my time in NICU this syndrome had popped up each time I plugged in her symptoms and that was even before the seizures. However I had been told that all her tests were normal and she didn’t have any syndromes. Our lives felt as if they fell apart in a matter of minutes!
We have since tried steroids, topamax, and klonopin and still experience daily seizures. We have only made it 17 days without seizures in almost a year. Each time I hope and pray that she will be ok and that it will be the last one.
I know that cannabis oil is not a cure all for Lainey but it does give us hope! Our daughter should have the opportunity to have cannabis oil available to her. She shouldn’t have to wait or leave our entire family to move away for treatment! In order to help one child I would have to leave another! Please help support our fight!
You can follow our story at Facebook.com/lovinglaineybug