Wednesday, December 30, 2009

What else can go wrong?

OK, this is getting ridiculous. Here's a list of stuff that has gone wrong and when it has done so.

The Day before we leave to the Mayo Clinic

1) Sarah pulls out of the driveway and due to the cold the side mirror on my truck breaks. I cut the bush back, with a saw, that caused this (it was weighted down with snow and ice)
2) Zane jumps off the bed and into the glass french doors. He is rushed to the ER and receives 9 stitches above his left eye.
3) On the way up to the Mayo Clinic I feel something wrong with my brakes, mind you we are driving through an ice storm.
4) This one happened while we were in Minnesota. I go to open the back door of my truck and the handle brakes off.

Since we have been home

1) Two days after we get back from the Mayo we have to take X to the ER for stomach pains, they send us home saying it's constipation
2) The very next day he's pale and doubling over in pain, so we take him to our pediatrician. She says take him to the ER. We go back to the ER, he's given an enema (Molasses and Milk) and we are told the seizures are messing with his stomach as well as the new medicine. I want to punch the first ER Dr. for blowing him and Sarah off the first time, he was not there.
3) I find out that the thing wrong with my brakes was my caliper. It got stuck or is blown and totally ruined my rotors. I was told I need new rotors, caliper's, and brakes, a nice chunk of change to get that fixed, we are waiting.
4) I slowly drive up the driveway and the bush full of snow and ice that messed the mirror up the first time completely rips it off. This time instead of cutting it back, I am mad and I tear off the branches with my hands. I will be uprooting these bushes in the spring, with a shovel.
5) My TV connections are all messed up. Good thing on this is it is still under warranty.
6) The dryer that someone is letting us borrow until we can afford to buy a new one, it quit working. Not totally, just the heating component, everything else works on it, and that is more of a guess since no one has looked at it yet.
7) Sarah scrapes the van with the bumper of the truck, it was a small scrape which she felt terrible about.

Now if God is trying to teach me a lesson somehow, I wish I knew what it was so I could just learn my lesson and crap would quit happening. This whole time we have been praising God in the midst of our storm, but all these little things are messing with me. Not to mention the amount of work I've had to take off has really affected the paychecks. So needless to say the stress level here is through the roof.

Why is all of this happening? I keep trying to think of Job, not to compare my life to his, his was way worse. I just am trying to figure out how he dealt with all the crap, and still not curse God. I can hear everyone reading this "Why would you ever think that?" I'll tell you why CAUSE THIS SUCKS, AND THERE IS NO REASON TO IT and there is a huge part of me that feels like I should be protected from all this small stuff right now. I am always going to be honest on these post so here it goes. We are dealing with our son being diagnosed with Focal Cortical Dysplasia, and he has to go in for brain surgery soon. I would think that I would be sheilded from all this stupid stuff until a later date. Am I blaming God? NO. Does a part of me want to? Yes. Am I ashamed of that? Yes, but I can't shake it right now. Sarah and I are doing better than we ever have been before, but the stress is enough for us to still falter and snip at each other at times. All of this makes it so much harder to stay strong with everything. I know I need to keep on keeping on, but I honestly feel like freaking out.

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.

The Beginning

Looking back October 12, 2008 was a bittersweet day. On one hand my beautiful sister is married, that's the sweet part. On the other hand our sweet Xander has his first freak out, and I am the first one to see his hand having a seizure (The bitter part). Back then we called it hand wiggles, its a silly name, but there is nothing silly about it now.

I remember it so vividly, it was a cool and very windy day, the grass was still green and there were still some flowers in the gardens. The wedding had not started yet, and people were running around getting the last minute stuff ready. I was watching Xander as he was walking ahead of me when he turned towards me and screamed in a very panicked state "Daddy my hand!". I could see his face was very concerned and scared, I looked down to his hands and noticed his right hand convulsing in a slow but strong pattern. I could see how his hand was in a somewhat stuck position, his thumb leaned over to his ring finger while his other fingers extended out and his wrist slightly curled down. I had no idea what was going on and in a somewhat desperate attempt to calm him down I shook his hand, I remember thinking he was having some sort of hand/arm cramp, and shaking it would help. I thought it did because no sooner did I stop shaking it than his hand stopped "wiggling", I started rubbing his forearm thinking "Its just a crazy cramp, if I rub it out he'll be OK". And he was fine afterward, even explaining to me what happened.

There was a part of me that was really concerned, and another part that was thinking "It's nothing, don't overreact". The part that was concerned was very overbearing, enough so that I told my sister (The Bride to be) that her ring boy was going to have to leave if he hand another hand wiggling episode. I assume she was preoccupied with "her day" that she wasn't gonna let that bother her. She did ask about him later in the day though. It didn't happen again and the day went on. I had to sing for her wedding and was totally distracted by what had happened, and by the wind.

Later that day I talked to my cousin about it, and he and his wife mentioned that Xander had said something about his hand wiggling earlier in the day. They said that they didn't see anything happening, and assumed it was a muscle twitch. The more I talk about it with my wife Sarah, and my cousin, the less I thought it super serious, and the more I thought it was a crazy muscle spasm. I think that Sarah could tell I was really worried about it and kept saying "It was probably his nerves, he'll be OK Dan"

As the day turned to night, Xander played and danced with cousins, and there were no more episodes. I let myself forget about it, and began to enjoy myself at the reception. Little did we know how much our lives would change from that night on, that would be the first of many seizures, and changes in our lives.

Tuesday, December 29, 2009

Why All This?

Why all this? That's a pretty good question, one I asked myself over and over again. The answer? Because I can't shake it, as soon as all of this became serious about 10 months ago I have felt like doing something like this. It always helps me to write out how I feel, that's just the way I am. I continued to ignore this feeling until recently; mid-december I started a Facebook page for Xander, so people could keep up on his status. I am very protective over who his "friends" are because there are so many weirdos out there. It was, and still is good, but I needed more to keep my mind from going crazy. A few days ago Sarah found a family site that looked exactly like what I had been wanting to do. They were the Turner Family of Arizona and their daughter is going through something very very similar. They are a little further in this than we are, but it was very theraputic reading what they have gone through, so I decided to do it.

Their are a few reasons I like a site like this for our family. Reason #1, for this is, besides it being theraputic for me, is it is a good way for famliy and friends to keep up to date on what is going on. I can be way more specific on this than I can on facebook. Reason #2, It gives those who want to pray for specific prayer needs exactly that. I know of a few "Prayer Warriors" who love to be able to pray for specific things, and that's cool with me. We will take all the prayer, specific or not, we can take. Reason #3, If someone else can read these, and benefit from them as we have from the Turners, then Praise God.

The next few post will be more of a historical review of what has happened the past few months. Once we get those all out of the way, we will start posting all things current. There will be more specific things in these next post, and hopefully I will be able to provide website to anyone who has any questions, or is just interested in all of this. As far as questions go feel free to ask us, that's part of the reason this is here, whether we know each other or not. We really want to provide hope to any other families that may have to go through this or something similar.

Alright, so I hope this will help, or is informative to anyone who wants to know, and let it begin.