Adam's Adventure to Mayo!

For those that do not know Adam started having seizures on September 1st, 2014. We both had the day off for the holiday and we were spending the day with our then only child Bentley. Adam has never had any seizures prior to this day and there is no family history of seizures for that matter. So as you can imagine this came as a huge shock to us. Adams seizures are classified as grand mal seizures with convulsions. We were hoping that the incident that September was an isolated one, but no such luck. Adam has since had a seizure every 5 to 6 months with breakthrough seizures sporadically. With some of the seizures he knows that one is coming on and is able to sit down and just wait for it to happen, other times he has no idea and “wakes up” 4 hours later in an ER bed confused and in pain (he normally bites his tongue and falls if I’m not around and unable to catch him). More recently the seizures have increased in their severity and frequency (every 3 to 4 months now with 2 to 3 events per seizure). The most recent seizure was on Easter morning and after the doctors told us there was basically nothing more to do than to increase his dose to 500mg over the maximum allowed daily dose (so he is now taking 3500mg of Lorazepam daily) we have decided enough is enough. After each seizure Adam isn’t able to drive for 3 months or until cleared by his doctor, and since the last two seizures were so close together he is unable to drive for at least 6 months. Through all of this time Adam ended up having to part ways with a job that was unable to accommodate his disability after being with the company for 4 years. We have also had our second son Braeden and Adam has since found a job that truly cares about his health and is willing to let him take a leave of absence to seek medical treatment at the Mayo Clinic in Rochester, Minnesota. We have exhausted all of our options locally and were even seen by the head of Neurology at the University of Cincinnati Medical Center with little luck. It’s hard for someone you love to be sick and not know how to fix it. With many illnesses there is a cut and straight course of treatment but the brain isn’t so simple. The look of defeat on Adams face after every seizure is absolutely heart breaking. I always dread walking into his ER room seeing him with his oxygen mask, IV bags, and monitors. If he is asleep he always wakes up in a panic and is extremely confused and weak. If he is awake he looks at me like he thinks he has disappointed me, which is hardly the case. I know he is concerned for his own safety but I know he cares far more about the safety of our boys. He is afraid to ever be with the boys by himself in case he has a seizure and is unable to call for help. Having 2 boys under the age of 5 is difficult enough on its own let alone adding the stress of this unpredictable disability into the picture. Adam and myself have had to miss a lot of work over the past 3 years while he stays in the hospitals as the doctors wait for his kidneys to regain regular functioning after each seizure, sometimes it happens more quickly than others. I stay with him when I can as the seizures have affected his short term memory and he is unable to answer questions at certain times. Plus the doctors like to know what happens during the seizures, how long they last and so on. The Mayo Clinic is our greatest hope at this moment. They offer comprehensive treatment with subspecialists in the field of Neurology. They will be treating Adam as a whole and trying to get to the root cause of his seizures not just treating the symptoms of his seizures. This is huge news for us as increasing his medication isn’t an option as it will eventually cause his kidneys to stop functioning. We are going to explore all viable options and Mayo is the place for us to do this. But this doesn’t come without a cost. As we do not know how long we will be staying in Minnesota it is difficult for us to budget out the financial aspect of this trip. We will be there for at least 2 weeks. We will not be staying in the hospital as everything is done as outpatient procedures with afternoon follow up visits. The boys will be staying behind with family and friends that have been so gracious to care for our little loves. Financially we are in need of help, the cost of raising two little boys can be difficult in and of itself without adding Adams and Braeden’s medical issues into the picture. Shares and prayers are equally appreciated as well as monetary donations; every little bit will help our family in this healing process. We do not know the anticipated medical cost as far as insurance goes. We have to wait until Adam has been at his job for a year and won’t know the exact details till the end of July so I will do my best to keep everyone updated along the way! Thank you so much and we love you all!