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It was a long and lonely road, not much to see other than the corn growing, and the clouds changing shapes. I sat in my truck wondering if I was going to stay awake driving through the state God had forgotten. Iowa was a place where even Angels feared to tread…….. I thought that beginning was appropriate, considering the title. I did forget something in “The Beginning III” that I want to add in this one. While we were at the hospital, one of the two neurologist had the nerve to tell us that his hand twitches were not seizures. She told us that they were ticks, or a form of tourette’s. Trust me at that point we had had enough, it felt like everyone thought we were making a bigger deal out of this than we should be.

The next week was filled with so much frustration, why do we have to wait 3 months to see one of the two dumb neurologist (I know kind of an oxymoron) that don’t think he has seizures. And it would be 8 months before we could see the best neurologist in the city. Then it hit me, the Mayo Clinic, one of our good friends Travis had always talked about the Mayo Clinic. He lived in Rochester, Minn. his entire life, and would always tell us how great it was. He would tell us stories of how Middle Eastern Prince’s would travel to Mayo, or how the President would get checked there. I always made fun of him, but now I needed to know if it was real or not.

Sarah did all the hard work, she researched, and made the phone calls that needed to be made. Insurance said that they should cover it, and our pediatrician thought it was worth a shot. My question was, “If it’s one of the best hospitals in the nation, how long is the waiting list to get in?”. After all, we were looking at a 3-8 month long wait in Omaha. The answer we received was 2 weeks, 2 stinkin weeks. We were so relieved, and mad at the same time. For obvious reasons we were happy, Xander will be looked at by some of the best doctors in the nation. We were upset at Omaha, and the lack of urgency they had. I think that if I was a Doctor, or even a bigwig for a hospital, and I found out that it was easier to get into one of the best hospitals in the nation, before my hospital, I would change that. It’s crazy that I could have 4 appointments (More if we needed them, and one that lasted a week) before I could even been seen in Omaha. Sorry about that, had to get it off my chest.

We kept our appointments, just in case, and scheduled with the Mayo. Two weeks later we were on our way up there. I have made the trip up to Rochester at least 10 times, I do not remember it taking so long. I also saw more windmills than I have ever seen, besides in Cali., there was fields of them there. When we arrived we were able to meet up with Travis and his family, his big family. We were greeted with 7 smiling faces, two hairy dogs, and 10,000 lakes. By the way, in Minnesota if you see a ditch full of water, you get to name it, and notify the authorities, that is why they have 10,000 lakes. I have named a lake every time we have visited.

The Eckersons were more than gracious, and treated us like family. We caught up with them until late into the night. The next morning we were up early, and off to the M.C. The place is HUGE, and intimidating, yet it felt right being there. We had such a peace being there and just kept saying “This is where we’re suppose to be”. If I were to give anyone any piece of advise it would be this, When someone you know or love has any medical issues do not settle. Research, and go to the best, because there is a reason they are the best. Now there are some who do not have the luxury of being able to do this, then I say fight for everything you can get.

The M.C. is a well oiled machine, simply amazing. It is like it’s own NYC, people of all races, constant movement, and organized chaos. Admissions were a breeze, and getting around was not all that hard. Everyone and I mean everyone that worked there was extremely helpful. Our first item on our agenda was to meet with a Dr. Patterson who was incredible, let me explain why. We were warned by all we know that neurologist are not very people friendly. They say it’s because they are terribly smart, and that causes them to be a bit odd. Dr. Patterson was so normal, compassionate, and loving toward our son, I actually started to get a lump in my throat as I watched him. It was in the small ways we had yet to see an a Doctor act toward our son, like compassionately saying to him “Your such a brave and strong boy aren’t you” or “I’m so sorry you have to go through all this Xander, but we’re here to help you, OK?” Being the detective first class that I am I noticed that Dr. Patterson was careful with his words when talking with us. I told him, “Say whatever you need to say, if your worried about our feelings I understand, but all we care about is getting our son fixed”. I could see the difference in his body language and he seemed to speak more freely.

Dr. Patterson reassured us that he was going to do his very best, along with a whole panel of specialist, to help us find some answers, and start on a plan of attack. He thoroughly explained the test that were to be done the next day, and asked us if we had any questions. We asked a few and he answered them without making us feel stupid. I finally felt like a small part of a huge weight was off my shoulders, we had found a place for our boy, where they wanted to figure it out. Sarah and I looked at each other, and I could see the relief in her face. After we left she told me she loved Dr. Patterson, I figured it was because he was so incredibly nice, and helpful. I later found out it was because he was Australian, had that rugged outback look, and his accent was thick.

The rest of the day X had test that needed to be done, and everyone there was super nice. Now we have been to hospitals all over, Kansas, Cali, Boston, Missouri and Nebraska (Mostly for me because I like to get hurt on trips), and we have had good service and nice nurses, this was different. It was the way they did it, and if you are a parent then you will really understand this next sentence or two. You can usually tell when someone is being nice cause they have to and when they love their job and as a result, love your kid. Small things like gently talking to your kid, caressing his head, and actually listening to him. Even though this was their job, and had done this countless times it was seemed as if the spark had not left. We were totally taken back, even the guy who was in charge of nothing more than showing us where to go made sure he talked to Xander, and gave him some stickers when he was all done.

Xander had blood test done or pokey shots, as he calls them, and that was really sad. I remember being little and having shots, looking at my dad and pleading with him to “help” me. Xander did all of that, minus the help part, he just asked me “Daddy, please tell them to stop”(Always a polite boy). That was heart wrenching, being on the other side was worse because I knew that there was a part of him that did not understand and felt betrayed. The crazy kid refuses to look away during shots, and watches the entire time. After he was given his stickers he had had an EKG that needed to be done, that was no fun. He did not like that at all, but lucky for him his Momma was there, and he was able to get a nap in.

After all the test were complete it was time to go home, and get some rest. The Eckersons are awesome and went beyond the standards of friendship, offering us their home, food, children’s rooms, and childcare. We had to keep Xander up most the night with no food for the EEG that was to be done.

The next morning came early and Xander had been replaced by Oscar, he was not happy. I can’t blame him though, no food, and lack of sleep would tick me off too. The EEG went about as well as we could ask, he had a small seizure during the test which was a plus. He napped for most of it, and when it was all over, he remembered how hungry he was, and let everyone know. We had a plan in place for such an event as this. We had about 2 hours before our appointment with Dr. Patterson, and a place called Pannekoeken Restaurant. The Eckersons had told us about it and it was great. Xander ate to his hearts content, and when you order a pannekoeken, they jog from the kitchen to your table yelling “PAAAAAAAANNNNNNNNNNNNEEKOOOOOOOOOKAAAANNNNNNNNNN; X loved it, I did too. We try to go every time we are there. In case your interested, or at the Mayo here’s the site http://www.pannekoeken.biz/index.php

As the visit with the neurologist drew near, we all were a little nervous. When we arrived at the waiting room, we thought “Well this is where the love ends, we are going to be waiting for a while”. NOPE, the wait was less than 20 minutes, despite a room full of about 20+ patients waiting to be seen, and a steady stream of people arriving. They have this thing whole “Helping people” thing down. If your wait is 20 minutes or longer they want you to let them know, and they do something about it. That is not normal, trust me, after all the different hospital stays/visits that we have had, it’s not normal.

Dr. Patterson was still awesome, and explained the results of all the test, his EEG had shown an abnormality, despite everything else being normal. Including his MRI. After a brief discussion about this, I thought we would be done talking about his test, and results. I was surprised as I watched the Dr. turn off all the lights and begin to explain, in terms we could understand, the MRI results/pictures on his computer for the next 15 minutes. If he would use a medical term he would explain it so we could understand, and even showed X cool pictures of his brain. We all learned so much just being there.

We were told X had Simple Partial Seizures, and Complex Partial Seizures (This should give you info. on both types http://www.epilepsy.com/epilepsy/seizure_complexpartial )
We were prepared for that, but honestly I was hoping they would say that he was OK, and his seizures would be gone real soon. I knew at the time it was wishful thinking, but I really wanted him to be the worry-free boy he once was. I was starting to miss those days; more now then ever. We talked extensively about different medications, side effects, and what we all thought would be the best. We chose to go with Tegretol, we would start out at the lowest dose possible and go from there. I was very pleased with the appointment, which lasted almost an hour, we were never rushed, or just another patient, I think that says a lot.

I really don’t remember much about the ride home, I know we talked a lot about what was to come, and how we had to prepare for it. I think it was the fact that we had a wide variety of emotions that led to more of a quiet ride home. I know I did a lot of thinking, and a lot of not thinking (Guys understand this part, I have yet to meet a women that does).

The next post should take us all the way to the next Mayo trip. I know I am running behind, work and part-times are always getting in the way. Plus if I’m on this too much Sarah starts to tell me I need to marry it (The Computer). I looked into it and that type of marriage is not legally binding so I’ll have to wait till California or Massachusetts allow it.

Looking through these post made me realize how stressed and heavy our lives have been this last year (2009), so I wanted to share some good news. I think that in the last year we have been so blessed by so many people that I am going to forget someone or something. If that happens please forgive me, if you are really bothered about it write me, but you should kind of just get over it.

I am not going to name names, or who has done what, you know who you are, and more than likely we have thanked you, if not “Thank-you”. When I was younger I can recall a sermon in which a pastor said that doing things for people and never being found out will reap far greater rewards than doing things for people and looking for a reward. He went on to explain that mans praise is never as rewarding as Gods blessing. I know it is all in your heart, but I do not want to praise anyone specific in this post because I truly feel like God has a huge blessing for those who have blessed us. That being said here is a short list of how God has blessed us in just the last month.

Before leaving on our trip we had about 5 people give us money. While we were at Mayo, an organization donated money as well. I have had someone offer to help me fix my vehicle, as well as pay for the repair. I called an appliance place because we thought that the dryers heating coil was broken, a very nice man answered the phone and walked me through all the steps on checking that, as well as what else could be wrong that i could do myself. The problem was a fuse, and I was able to fix that within 20 minutes. Our broken vacuum was only a broken belt which was replaced.

I have been offered some part-time jobs to make some extra money, since there has been no OT available. I have graciously accepted and although I have to work a little more, it is at night when all the kids are sleeping and it is very good money. There are some people who know our situation, and have allowed me to work in their place.

Someone offered me a Wii, we already have one so I had to decline, but how awesome is that. We have had numerous people watch our kids on short notice, and not ask for a dime. Some even taking time off work to help us out. Someone helped me unfreeze my gutters in 20 degree weather. *Not a month ago, but a little more that 2 months ago someone has let us borrow their spare, and really nice, washer and dryer. Our took a dump on us, and we couldn’t afford to buy new ones.*

Zane did not lose an eye when he fell of the bed and into the glass french doors, only 9 stitches above his eyebrow. We finally had an answer to Xanders seizures. Our trip before this last one a family allowed us to stay in their house, they fed us the entire time as well. Countless calls when we have needed them, and even more people praying for our Xander, people we have never met. People that have only heard of Xander through our friends and family.

Xanders preschool has added another teacher making it easier for him to keep on going instead of stopping all together. How awesome is that, he still gets to go to preschool and play with all his friends, and we have the assurance that there will always be someone by him in case he has a seizure while at school.

A family decided to “adopt” us for Christmas, so we received numerous gift cards to everything from grocery stores to toy stores.

I could go on and on, I’ve already edited this post three times to add new blessings I had forgotten. I know that the post “What else can go wrong” was a downer, but that was how i was feeling that day, I usually can remember all the good things and get over it, but I couldn’t that day. I feel bad about it, but I am keeping it there, it is not being erased. It is a good reminder to me that life still happens no matter your circumstance. Just like this will be a good reminder that “My God shall supply all my needs”. Plus you can see that we are real people, that we don’t have our heads stuck up in the clouds. There are many times when this whole thing really bums us out, but we press on. I know that if you don’t know us, or barely know us all this talk of God may be weird, but it is real to us. I am not trying to shove God down anyones throat; it’s just that he is very real to us, and I will always give credit where credit is due.

I wrote on Facebook a while ago that I have no idea how people do this without God. I still hold onto that, call it a crutch if you want, I’ll tell you that I want to be weak. Because when I am weak he is made strong, a concept I am learning more and more everyday. All of these blessing are great, and much needed, but how funny that some are so hard to accept. When that pride comes, I try to remember “Be weak”.

One last thing, to all who have blessed us, we are praying that God would bless you. We have been so humbled by everyones love and support. There are times in my day in which I think “I am not deserving of this, thank-you God, and please bless them all”. I know I am rambling, it’s 2:43am and I worked 13 hours yesterday, 6 hours of sleep then 11hrs of work today, but I am amazed at his love for us.

That’s all for now, but you’ll see many more blessings in future post.

I was thinking about all of these “Beginning” post and I started laughing cause they are so long. I think as you read on you’ll see why I post these as “The Beginning”, there has been so much that has happened now, and I really feel like we just started “The Middle”. I don’t really like that title, so I’ll have to come up with something better. Anyway, here we go…..

Tuesday the 17th of March 2009, it was 6:35am, Sarah and I were both sleeping in the living room, on the lovesac, when we heard X fussing. Sarah then said she could hear him having a seizure and I remember her yelling “Dan!!!” When she entered his room he was lying in his bed with his right arm bent and shaking. Xanders eyes and mouth were open and Sarah had picked him up and walked into the living room. He fussed for a couple of seconds then became quiet, aside from the occasional moan. He was still having a seizure, and about 2 minutes into it he wet himself. The seizure continued for about another 10 minutes.

I remember watching Sarah hold my little boy in her arms, she was stroking his hair and gently talking to him in only a way that a mother could. I can recall her saying “Dan, he’s not snapping out of it” I stood above them for a few seconds and said a quick prayer, “God, please don’t take my baby from me, please”. I had never felt so helpless, so scared, or so numb. I took a knee next to them and prayed over him and just talked to him, telling him it was OK and that we were right there by him. I refused to allow my emotions to overwhelm me, and I shut out all fear, tears, and thoughts. For me one of the worst parts of this whole ordeal was hearing Xander try to talk. You could hear his moan and could tell he was trying to tell us something. Gurgles, I remember gurgles, in my line of work, gurgles are either a slight sign of life, or a really bad thing, usually the later. Just a side note Xander would tell us later that during this whole time he was telling us that he was OK.

After the seizure X was still unresponsive for about another 10 mins. he was looking around, but with a complete blank stare, like the life had been taken out of him. His mouth was open, and he was drooling; Sarah would later say it was like he was a child with severe autism. Sarah handed X over to me, and called a neighbor, asking them to watch our twins while we rushed to the hospital. They graciously offered to help, and watched the house while we rushed to the hospital. While she did this I changed X; I know some may ask why I changed him, I did it because there was time, and I didn’t want him to be embarrassed, and I didn’t want him to know he lost control like that. If you call it silly, or a waste of time, I understand, but to me it was something little that I could do for him until we arrived at the hospital. I didn’t call 911 because it would have taken them longer for them to get to our house than for us to drive there.

By the time the neighbor arrived, we had him in the truck and ready to go, by now he was starting to come back to. We arrived at the hospital and it was the same routine as last time. It was super frustrating thinking that we were going to go back home one more time, with no more answers than what we already had.It was 7:10 before he said a word to us, and then he began complaining of a headache over his left eye. X threw up in the room 2 times, and had a hand “Wiggle” at 10:23am. Finally they decided to keep him overnight, at last we would get some more answers, so we thought.

After being placed in our room, we waited for the neurologist, we had other doctors and nurses come in and we would have to tell them the same story, over and over again. When the neurologist finally arrived we were extremely disappointed, they (there were 2 neurologist doing rounds today)told us they THOUGHT he may have simple partial seizures and wanted to put him on meds. Sarah had already researched the meds. he could be on, and did not like it. It was Trileptal, a fairly new drug, with side affects we were not comfortable with. It was hard for us to take this since they were making an educated guess, and telling us that the soonest they could get us in would be three months from now. I was thinking “What the Hell do you mean three months from now. You want us to put our kid on meds. that may not even be right for him”. I understand that they are smart people, being neurologist and all, but what if it was something more than just seizures. I was pissed to say the least, and I felt like we were being blown off. Three freakin months before he could be seen was ridiculous, what if something went wrong before then.

Our Pediatrician came in to see X, and gave us the name of what she and other local pediatricians considered the best neurologist in the city. She told us that the Dr. we had seen was good, but she thought this one was better. There was other stuff said as well that made us reconsider our options. After all was said and done we were able to leave that same day. I felt it pointless to stay overnight if they were not going to run anymore test, and it was more of a sleepover than an effort to figure out what was wrong. We left, and I was so irritated, for a number of reasons.

What I am about to say is my thoughts only, I am not saying this is the way it is, or “gospel”. I have talked to numerous men about this topic and have experienced so much in this area that I feel the need to speak on it. Maybe its so a wife or girlfriend may have a better understanding, or maybe I just want to talk about it.

As a Man, and Father, I feel an ingrained sense of duty to protect my family, and to lead them through “Storms” the best way possible. This was not the best way possible. I was mad because I couldn’t “Fix” my son, and I couldn’t make it easier for my wife. I was mad because I had to watch my son go through things I would never wish upon anyone. I was mad that I was so helpless, and useless, and I felt that I bared the sole responsibility for this. What had I done to cause this? Was this some sort of test I was being put through, and if so why? In the months that would pass I would on a regular basis pray and Beg God to give this to me instead of my sweet Xander. I was upset I was not smarter, maybe if I was smarter I could help him more. I was mad I was not wealthy, maybe if I was rich, I could pay for the best, and this would all be fixed. I felt like, for whatever reason my family was getting the short end of the stick, and it was not fair. They deserve the best, and I can’t give it to them. Lucky for me I have a great God, wife, extended family, friends, and Christian family to help me through this. I still struggle with a lot of these emotions, but I am grown, and much wiser than I was before, so I can handle them.

The next post will begin our journey with the Mayo Clinic, stay tuned, it’s coming in the next day or two.

I am not the type of person who makes resolutions, or says “I know this year is gonna be my year” I try to make changes in my life when changes need to happen, and I know that I am not in control of how my year is or is not going to be. By that I mean I don’t believe in “chance” or “luck”. I say that not to offend anyone, merely to explain the way I am. That being said, I found it so very interesting how I spent the last few hours of 2009.

I had already taken the day off months ago and Sarah was super excited, this would be the first New Years I had off in 7 or 8 years. Due to our circumstances, we had talked and agreed that I should go back to work after only a week of vacation instead of the two weeks. That meant that I would have to go back to work on New Years Eve, we were both bummed out. Sarah begged me to take one more day, but all I could think of were our bills. Just before I was going to go in to work I received a call from my partner (work) and he told me that he had the day off and would not be at work. He also told me that everyone who worked was going to be on a not so fun assignment. After I hung up, I started to waiver on my decision, then I decided on one more family day/night. Sarah was excited, so was I, the kids had no clue and were trying to hit each other with their trains.

We rented some movies (Red box, whoohoo) ate Chinese, and began to figure out our day when X started this odd twitching. We watched him as his twitches became more frequent and stronger. It was mainly his upper body, and his eyes. It became bad enough that we called Mayo and spoke to one of our first Dr.’s up there. Dr. Patterson. He thought they may be constant seizures and that we should go in to the ER as soon as possible. Seizures that do not stop are really bad in case you don’t know. They say if you have one that last over 20 minutes you should rush to the ER for a shot of Diazepam (A type of Valium)otherwise there could be possible brain damage because the body/brain is not and cannot recuperate. Well we had to go since it had not stopped and it had been 30 mins. The good thing was he was awake and alert, so no brain damage; the bad thing was were going to the dang ER again,

We chose not to go the Childrens, too many bad experiences there, and we were still upset about the last time. If you work there, sorry, I know it’s a great hospital, but on the chance that they might mess something up again, we decided it was in the best interest of all parties involved that I do not go there again so soon. Plus UNMC (University of NE Med. Center) was literally 15 blocks away, and I know most of the ER Dr.’s and nurses there.

When we arrived I was greeted by a co-worker, we were able to skip all of the questions and be seen within 5 minutes because the admissions people know me, and brought me right in. We still had to do the question and insurance thingy, but I was able to do that after we got to our room. The nurses were great, and the 3rd yr. resident was too, although I told her I was not amused at Childrens by there mistakes, and was not afraid to voice my opinion on matters of my sons health. She then stated “I am more than willing to help you in any way that I can, but I will also be asking another Dr. to come in and check him as well”. I expressed my gratitude and we were seen by a very experienced ER Dr. She was incredible, she stroked X’s head as she talked to him, and sat in the room talking to him and watching his twitches for 20 mins. I had X’s Mayo # and she called up there to talk to the neurologist about his situation, this is way more than Childrens had done in our many visits there.

While we waited for the Dr.’s to talk about what was going on X and I hung out. We watched some cartoons, talked about how he had a crush on Selena Gomez (Wizards of Waverly Place on Disney channel) and then we watched AFV, and laughed at all the silly videos. We then watched when animals attacked and he had so many questions. I wanted to change it, but he loves animal shows (like his daddy) and refused to let me change it. The only reason I didn’t change it was because his questions and reasoning were right on. If someone was bit becase they were feeding an animal they were not suppose to he would say “We don’t feed lions daddy, they might think your dinner and bite you”. If the host would explain the reason why someone would get hurt or bit by baboons, he would repeat it all to me, ask questions, go through his own scenario and then explain to me why I shouldn’t mess with baboons.

Once that show was almost over, we watched the ball drop in NYC. He loved it, soaked it up, laughed, then yelled “Happy New Year” and gave me a fat kiss on the cheek. He wanted to kiss like they were on TV, I had to tell him that’s the way Mommy’s and Daddy’s kiss. He then wanted to know if everyone kissing on TV were married. I laughed and tickled him, thinking why did I just set myself up for that one, I managed to avoid it.

I sat and reflected on the entire year as we waited that last half hour. A year ago I would have never imagined being at the hospital as much as I had been this last year. It really sucked at first and we were so impatient. Now 3 1/2 hours passed, and I waited, i just waited. I asked questions when I could or should, but I mostly waited. I know one thing I have grown in is my patience, Sarah would laugh, but I think if you ask her she would say it too. 2009 was a different year, I think I cried more in 2009 than I had 2002-2008 combined. I look forward to this year, to my son being healed by God, whether he uses divine healing or medicine, it’s still all God. After all God was the one who made man smart enough to successfully figure out medicine. I look forward to learning new things about my wife, doing this marriage thing right with her so our boys can see it’s possible. I look forward to watching my TWINkies grow and learn. I also look forward to see what God is doing and will do with me.

The Dr.’s ended up deciding that we would get a perscription and be on our way, no overnight stays or emergency shots. We ended up going home and I made it in time to kiss my wife. As we counted 2009 away, X had a 20 sec. seizure that finished with 10 more seconds left in 2009. I thought to myself, how appropriate, I hope that means this is the beginning of the end. We kissed and 2010 began.

I promise I will get the history section done, it’s been crazy here. I will get it done, I just wanted to get a new post out that kept you up to date. By the way X went on his first unofficial Date two days ago. A girl asked him to go the “Rudolf the red-nosed Reindeer” at the Rose, and he went. He went with her, her mom, grandma and brother. It was awesome, he was excited and embarrassed, he still won’t talk to us about it, he has a little, but not much. I had to tell Sarah to quit teasing him and to quit calling it a date.

Part III should be done in a day or so, stay tuned…………

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.

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.

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.