The Beginning Part II

On this Post I will try to cover everything that happened from October 13, 2008 to our first ER visit. It may be long so be prepared.

Just some side notes that are interesting to us, back when Xander was about 2 1/2 years old he would tell Sarah that his right hand didn't work right. He was pretty much left handed from about 2 on. Now if you know Xander you know that he is very bright and articulate for his age. At 2 years and 4 months we had a speech pathologist come and spend time with him because of his stuttering. After performing some test they called back a few weeks later and told us that he was more than OK. They told us that he was performing at a 3 1/2-4yr. old level in speech and comprehension. These facts would all later be very interesting to our neurologist, and help figure out the issue.


After our initial scare Sarah and I talked a lot about what had happened. Sarah explained that prior to the incident that happened on the 12th, Xander had told her a handful of times that his hand was gonna wiggle or it did wiggle. She went on to say that she had never seen anything happen, and thought that maybe his hand was having muscle spasms or twitches. We made sure to talk to X as much as we could about this, he was very descriptive when explaining it, but the "wiggles" did not seem to happen much. We called our pediatrician about the incident at the wedding, and she was very helpful, but at the time there was not very much to go off of. She is a great Dr. and decided to ease our minds by ordering an EEG for the end of Oct. and an MRI in Nov.



Both test came back normal and we were starting to think it was nothing, but watching carefully in case it was. Xander has a few small hand shakes in Nov. but nothing from Dec.-Jan. At this point we were beginning to think that we were in the clear, me more so than Sarah. Then on Feb. 21st, 2009 Xander had a big one. Here's a little background.



I was working a huge case with the Feds. (ATF & ICE), and I was out of town with several agents and my partner, about 2 hours away. That is where our case was taking us and we were planning on staying at least for 3 days, maybe more depending on what we got out of it. Sarah was home with our three boys, and Mindi. Mindi was staying the night for some reason (God?). Sarah would say "It was so random, I don't know why Mindi stayed the night. Donnie wasn't even outta town".



At 6:37am Xander woke up and got out of bed. He reached for the door handle and fell on his forehead. He would later tell us that it felt like someone was pushing him from behind and something was pulling his right arm down to the ground. Sarah ran to the room, Mindi following, and could see that he was having a seizure. He was face down with his eyes and mouth open and only his right arm was shaking. He then started crying and moaned occasionally. Sarah tried to call to him, and he did not respond. I can only imagine, since I was not there, how that felt; up to this point we had only seen slight hand or finger wiggles, and now this. This lasted for about 10 minutes, then he started to mumble, like he was trying to tell his mommy something. This lasted for about 5 minutes then he was able to slowly start to communicate. He started to talk and move his right hand. He could remember what happened before the seizure, but not aware of anything that had happened afterward.



During that time Sarah had called our pediatrician, we are lucky enough to have her home number, who told her to call 911. She called 911 while Mindi called me, I was still sleeping, and my phone was on vibrate so I didn't hear it. It was not until about 10 minutes later that I woke up out of a dead sleep. I went to the bathroom, and my work partner (and roommate at the time) sat up out of his bed and said "Dude, somethings been vibrating over by you" I could now hear it vibrating a missed call. I picked it up and noticed a ton of missed calls all private, which meant that it was my house. I called and I could hear the seriousness of the situation in my wifes voice. I think I talked to Mindi, but I can't remember. After being told what was happening I hung up, threw all my clothes in my bag, gave a condensed version of what happened to my partner and took off.


I made the trip from where I was at to the hospital in 45mins. I was flying to get there, I was pulled over once and the sheriff said "I want you to slow down, but I know you won't, be careful". When I got to the hospital X was the same as I remembered him, except he has a HUGE bump on his head, like the size of Montana.


After the first emergency visit we were told that he would need to see a pediatric neurologist. I think that at this point we were fairly calm about the whole thing, I remember thinking "OK, seizures are no big deal, we can handle this. There are a ton of people who have seizures". I kept telling Sarah things like "Listen, seizures are not a huge deal, it could totally be worse. Look at Mindi (A very close friend of ours who has dealt with seizures) she is totally normal". Well Mindi is almost normal she's kind of a weirdo. LOL just kidding Mindi, you are totally normal and cool. Sorry I can get distracted easily. As I was saying, we were totally keeping our heads and hopes up. We knew that with God we could handle this, and we knew that we were capable of handling a situation like this. All of our family and close friends were very concerned and very supportive. One of us would always sleep downstairs on our couch or "Lovesac" after this.


Later that night he had a small hand "wiggle" and that was it. The days leading up to the 17th of March were fairly normal, with the exception of about 7 seizures. They were not bad, only small ones in which his hand or arm would seize for up to 20 seconds and then all would be back to normal. During one of those episodes he told his Mom that he had "Dots" on his face. Dr.'s would refer to these as Pins and Needles. He also told us that sometimes he wakes up at night crying because his hand wiggles, then he goes back to sleep. This is when we started sleeping with him to make sure they were not happening more than we were aware of.

Our life had begun to change in ways we could never imagine. The crazy part is we had been being prepared for this by our Lord and Savior for the past few years, who says God doesn't care. More on that later, I'll title that post "Divine Preparation" if your interested, it may take a week or so for me to get to it since I'm still playing catch-up.