In October 2010, our family began. Brian and I began dating and I learned how to begin raising a then 2 year old, very mature, happy and playful boy named Carson. In February 2014, I gave birth to Tanner. The first few months were hard. Tanner cried and ate a LOT, but as a new mom, I thought it was all very normal and would end soon enough. At 2 1/5 months old, I started witnessing Tanner have (what I knew were) seizures, every now and then. Everyone else said not to worry and babies have weird movements, but I knew. Mother's Day weekend, while on vacation, Brian and I decided we needed to take him in as soon as we returned. Something wasn't right. We were sent to the hospital right away. While in the hospital, hooked up to an EEG, Tanner had many seizures. The day they came in and diagnosed him with Epilepsy is a day I'll never forget. Watching your child seize, uncontrollably, while you sit by and do nothing, is unlike anything words can explain. I thought it couldn't get worse...until it did. Tanner was not developing like he should. The anti-seizure medicine he was on (phenobarbital) took the seizures away for 3 months, but no smiling, sitting, crawling, reaching for things, making eye contact...nothing. After some genetic testing, the results came back with a CDKL5 diagnosis. The seizures came back August 2014 and he has been seizing, every day, since then. We have tried MANY different medications and holistic vitamins. He is currently on the Ketogenic Diet, although it has not helped either. He has had about 5 different types of seizures, Infantile Spasms and hypsarrhythmia being one of them. Nothing has helped him! November 12, 2015, he received his first dose of Epidiolex, CBD oil, as part of an FDA trial. We HOPE it will bring Tanner some relief. We LOVE him as much as humanly possible, every single day. We pray for a CURE so all children living with this devastating disease can live happier and longer lives.
If we were to focus on Tanner's inabilities, we would not be able to focus on being the best parents we can be because of the unknown and saddness. Allthough we have some hard days, we have chosen, as a family, to focus on Tanner's ABILITIES. I stopped reading the books long ago and decided to let Tanner teach me what he can do, in his own time!
roll from his back to his tummy.
roll from his tummy to his back (on 1 side only).
make people smile instantly.
talk up a storm and very loudly!
get excited and kick and play.
make eye contact with solid color objects, in the right environment, and follow it.
swallow without any issues and has a VERY healthy appetite.
stand in a stander for a consecutive hour, without fussing.
calm himself and/or get excited when he hears Mommy, Daddy or his big brother's voice.