Monday, December 20, 2010

Back for another round

So we are officially back for another round of tests. We were asked to come back since they advised us that if his seizures continue he will have permanent brain damage, not exactly what we wanted to hear. This whole time we thought he was doing great, going from 12-20 plus a day to 1-3 a month from March to August, and 3-7 from August until today. We were wrong and now we are back.

We have three options as it stands, the first (not in any order) is another surgery. Honestly that is not a very reassuring option as I am sure we will be told again, that another surgery is not in favor of us (statistically speaking) as the first one. Not to mention I am almost positive that we are going to be told that the section of brain that they need to remove is going to be his motor strip. Yeah, his motor strip, meaning possible paralysis on his right side and it is also possible that no amount of therapy will fix that. Not exactly a choice a parent wants to make, especially since there is now more a chance at failure then the first time.

Another option for us is the Ketogenic Diet, there is really to much on this to explain here so I'll break it down very simply for you. It sort of starves the brain, bringing it into a ketosis state. Stats are not on our side on this one, but they were with the first surgeries and look at us now. I think we are both in favor of this choice, seriously how many surgeries will it take, and how much brain will they have to take out before they either give up or he is not the same boy we love. This choice means a very strict diet, but those who have followed it have been "cured". Not all of them, actually a small percentage, but we seem to fall into small percentages all the time, so why not give it a try. The worse that could happen would be that it doesn't work, I lose weight (since I would do it with him) and we have to reevaluate our options again.

Another option is the Vagues Nerve  Stimulator, VNS for short. This is another options that is going to take forever to explain but simply put, it is an operation where they implant him with a machine (for lack of a better word) that will send an electrical pulse every time he is about to have a seizure to scramble the one his brain is sending. Kind of like short circuiting his seizure; although this is not proven, and there is much debate about this option.

Another option is to do nothing, sounds a bit like giving up, and irresponsible, but I guess it depends on how you look at it. This is another option that will cause much debate, like we are depending too much on God for a miracle and not looking at medicine (Which he created) to find a solution. And other would debate the opposite angle, that by not doing anything we are depending on an Almighty God, who has cured sick, caused the blind to see, lame to walk, raised the dead, and given us all hope.

I am not here to be the center of debate, whatever choice we make we ultimately are responsible for it, that alone is enough weight to bear. Those who have walked similar paths to this understand what I am saying and those who have never walked these confusing paths can only guess what it is like, never really understanding. That last sentence was not meant to hurt, it is the truth though, I can say that since I am going through it. After going through all of this I am fairly sure that I will not try to question any decision that is made when it come to health issues. I will never understand what it is like to have a child dying of cancer, so when I meet one, I listen, and am very careful with my words, and support them in any way that is possible, if only with prayers then so be it.

We have had the privilege of meeting incredible parents and children alike who are suffering through things that no one should ever have to, you learn that every situation is different, special, and incredible in their own sense. There is the girl in the wheel chair who is fighting cancer, one leg and lost hair. If you looked at her and judged her by her appearance you would say she was sad, and unfortunate, the moment she speaks you hear life and can sense a spark. I'm 31 years old and am intimidated by her presence, not because of the way she looks, but because of her attitude about life. Being around the "sick" puts things back into perspective, I think I just need to visit here every 6 months to remind myself.

Sorry about that tangent, I just started to roll and realized I am off course. Options, so many options and so much to think about. We only ask that you would pray for us as we choose our path.

Xander is doing well, besides a bug he caught last night, he is so positive about things and strong beyond his years. I am so proud of him, and when he is older, he will be on heck of a man, in every sense of the word. Those who are around him will be blessed, and whoever he marries will have a kind a considerate husband. He is always thinking of others, even now; when everyone received a brownie, except me, he offered half of his without blinking. Hugs and kisses come at the most unlikely of times and sweet smiles pour off his face like a sudden storm. He is contagious to be around, nurses are amazed at his sweet nature, and Doctors have mentioned his bravery and ability to do things that children 2 or 3 times his age are unable to handle.

We are in the middle of a storm, 9 more inches to add to the 18 on the ground, so I have to get off. The twins are terrorizing the playroom and I am sure it is going to take 30 minutes to pick this place up. I'll post more as time allows.

Sunday, September 12, 2010

Gotta love them festivals

I cannot wait until all of these stupid festivals are over, Since the middle of August it has been nothing but babysitting at these things. Normally I wouldn't complain, but lately I have been more easily annoyed at these things. Kids who think they can say whatever they want or don't have to listen to what we say, a whole bunch of "Entitlement" kids and parents who enable. Here's a good example

We caught a kid (21yrs., not really a kid, but ya get what I'm saying), pounding some beers right in front of us. Clearly intoxicated, and somehow unaware or unconcerned with the fact that he had an open container, he took a long drink as he stared at me. I walked over, took the beer away, explained to him that open containers or drinking in the street (Not the beer garden) was illegal. I even kindly asked him to refrain from drinking outside the beer tent, and explained that while I had the ability to kick him out, I was going to allow him to enjoy the festivities. He stumbled off, walking in an entertaining zig zag pattern away from the beer tent. No more than 10 minutes later he is in line to the beer tent, 6 pack in one hand, his other hand on his open bottle as he drank away (again maybe 15 feet from us). Now, I was annoyed, feeling as if my kindness was taken for weakness, I snatched his beer away and kicked him out (giving him another break since I still didn't cite him for open container), he laughed it off and made some reference to not wanting any problems.

A quick tangent, that is one of those ridiculous comments that if you really think about, make no sense. Take this kids statement that he doesn't want any problem, yet he says that after being told what he was doing was illegal, then repeating those very actions less than 10 minutes and 15 feet later. In my opinion, if you really don't want any problems than you go repeating the same thing that would have given you problems in the first place.

Back to the situation at hand; this kid was seen about 2 hours later waiting in line to get back in the beer garden, new clothes, same guy. I immediately recognized him and told him he had to leave, after a few rounds of "I've never met you nor have I been kicked out" and "Yes you have you changed your clothes, get out" he has a line that typifies entitlement. My grandfather is the lieutenant governor of Nebraska, to which I quickly replied, "Yeah that's nice, my grandfather's a preacher, now leave". Defeated, confused and drunk he left.

Parents who bring their kids (Less than a few months old, to festivals so they can have a good time, ignoring the fact that it is 9pm and their tiny baby should be at home sleeping. Some even bring babies out as late as 1am, to hang out at bars, or areas of recent fights/shootings. It's appalling, and very sad, children raising children. Parents that refuse to believe that their children are capable of the crime they are being charged with despite the fact that we showed them video evidence of their child committing the crime. I also find it interesting when parents Make statements that their child would not have done this crime had it not been for their friends. Or instead of having their child confess they ask us to leave and want an attorney; I know it's their constitutional right, but my parents, and most good parents would demand the child to fess up.

That has been my most frequent and typical contact with kids/young adults, so festivals are annoying. I should post how many dumb comments people feel compelled to make to police officers, or how when we don't want to talk we keep it short or walk away and people still feel the need to continue on. I could go on and on, but I have one last festival day to get to in about 2 hours.

Tuesday, September 7, 2010

A new Husker Fan

I hate being sick, It's just a head cold, but it sucks. Add to that my allergies that are bad enough I am suppose to be on shots for (Which I quit taking after a month) and you get a miserable me. Besides being sick and having allergies thing have been going well. The twins start pre-school in two days and X is still loving school.

No more news in regards to X, he has been doing well. He went to his first Husker game with Sarah on Saturday and the both of them are now fans. On Sunday all he could talk about was the Huskers, I thought to myself, "Great, another blind fan", I'm not gonna ruin it for him, he can like who he wants. Sarah's conversion was a bit of a surprise, I didn't think she would fall for the Huskers, but I guess the sea of red was too much for her not to accept.

Israel and Zane are talking so much now, it's still a bit comical and surprising to hear them communicate so well. I guess with X gone they feel free to express themselves, the sentences they put together are pretty impressive. The house is so much more calm without X teasing them during the day. Fights between the twins are rare, and that is a good thing for my sanity.

Below are some pictures from the Husker game





















Friday, September 3, 2010

You gots some esplainin ta do

So let me explain what caused Xander few seizures. On the Saturday after X's first week of school, Sarah gave X his meds. which caused him to question her on the dosage. We were then informed by our 5 year old son that the school nurse had only been giving him half of his afternoon meds. for the past week. At first we were unsure if this could be true, but Xander knows we do not joke about his meds, and he was adamantly defending his statement.

At first we were upset, then glad that he had not suffered from the lack of medicine. Oh wait, yes he was, we had jumped the gun. Totally forgetting that it takes 5 days for his medicine to cycle through, Monday thru Thursday were not fun. On top of his seizures we have to deal with a boy who was forced to take emergency meds, due to his 15 minutes or longer of twitches, but we had raised his dosage again and that always messes with his routine.

That week sucked, I was pissed that the nurse screwed up, even though she had the script, and Sarah had spoken to her. I was pissed X was having seizures, and was an emotional mess due to his meds, and he was upset that he was having seizures. The guy doing my roof was not calling back, and I had this leak in my basement no one knows where it's coming from. Plus my tractor broke down and my best friend Buddy was ran over by a car. Okay the last line's not true, but I felt like my complaining started to feel like a country song. 

So that week has come and gone and this last week has been relatively quiet. Emergency meds only twice that I know of, and the seizure episodes seem to be behind us. Although as I finished typing that last sentence I couldn't help but wonder if I was only jinxing us.

I have this great video of Xander running away from home on my phone that I will try to download sometime next week. He honestly tried to run away, I had to go get him, but in his frustration he told me he wanted a new Daddy. He said "I wanna new Daddy, with long, curly, black hair and not mean like you!" I wanted to laugh, but I remember thinking that my sweet boy is frustrated. I think I know why, although I have yet been able to get it out of him. But my questions have led me to this conclusion. Xander misses his daddy, I only get to see him about an hour a day, if that. School has been draining, and his increase in meds always mess with his emotions until his little body can adjust. I felt bad, we had a short talk in the kitchen before he started to fall asleep (mind you it was only 12 in the afternoon), and I reassured him that I loved him and that one day things were going to change.

Well a few days later, I received a phone call that would bring about that change. I was asked to go B-Shift (Days) and that will start the second week of October. When I told Xander the news, he was grinning like the Cheshire cat, and sheepishly replied "Really!?!" Good new for us, sad news for my newest friendship. As it stands, I work with a partner who I get along really well with. We joke that we are brothers and our families get along well, my Twinkies have a crush on his youngest daughter. It's gonna suck not working with him since we work well together. Hopefully he gets days soon so he can spend more time with his kids too.

This weekend bring with it a big babysitting job called Septemberfest. To the average person it's just another Carnival; to me it means punks looking for fights or even worse looking to shoot someone, like they did 2 or 3 years ago.

There probably won't be any new post over the weekend since I will be busy. Sarah and X are going to the Husker game this Saturday, neither one of them has ever been to one, so that should be interesting. When they get back I'm sure there will be plenty of photos, prepare to throw up from so much red. I am not a Husker fan, so I could care less, but Xander has already been brainwashed by his 4 and 5 year old friends.


Zane with Grandpa George after swimming lessons

Friday, August 27, 2010

I was right

So, as mentioned in my previous post, I announce he is doing well and he has a seizure. Well, I was right, last night he had 2 seizures and this moring one more before school. Maybe that means I should just keep it all to myself.

Thursday, August 26, 2010

Update and picture update

We have almost 2 weeks of school under our belt and so far so good. It seems as if X really likes it, from our conversations with him it all seems positive. Bedtime is still an issue for us since all three are still in one room, I was not as big of a fan as Sarah was about this whole thing, so we will see how long this last. It seems like when X is sleepy the Twinkies are not and vise versa, sooner then later we will have to start remodeling the basement.

Time seems to be ever eluding us, if it's not a busy week at work with overtime (aka Festivals), I am helping out with a fundraiser or Sarah has plans that were made in advance that we are tied to. Speaking of Sarah, she is going to compete in a mini triathlon this Saturday. It's scaled down, but nonetheless still a triathlon, I think she should do well considering she has been working out pretty consistently since June.

Xander has not had any episodes as of late, a blessing that I am a bit nervous to announce. It seems as if every time I start to explain to people how well he is doing, we take a step back and he has a seizure. Thanks to X being so sharp we found out his school nurse was only giving him half the amount of medicine that he needed in the afternoon. Sarah was able to call and correct that, an easy mistake for her to make, as I am sure she has a numerous amount of students to tend to. We are blessed to have this public school only a few blocks away, they really are one of the best. I am still torn at wanting to place our kids in a private school, but with the economy the way it is, and Sarah not working (Our choice) it is not feasible.

Here are some more recent pictures of the boys that I said I was going to post. More are sure to come, but as always time keeps on slipping into the future.




Sarah drew a heart on his hand so he could squeeze it if he missed us
First day of School and this picture says it all


It was a family event, the twins asked for him all day

One last Picture before we say goodbye

I needed one too


We showed up an 75 minutes early so the twins played on the playground




This is when he first see we are waiting for him

Mommy gets the first kisses



But I walk away with the prize



Sarah's birthday landed on his first day of school, we went to eat after we picked him up. He is so handsome and you can't see his scar unless you look for it.



This was her cake the Twinkies picked for her since it looked like a rainbow. She turned 21.......again.

Monday, August 23, 2010

Keep on Keeping on

As of late, we have been receiving an increase of tele-marking calls; today I turned my frustration into laughter. I am not a professional crank caller nor have I ever done stand up comedy, I do think I am a little funny, and today I practiced. Tele-Marketers beware, calling my house is more fun for me, although I do think that you enjoy it as well. It is posted on my facebook site and hopefully I can have it play on this site as soon as I figure it out.

X starts his 2nd week of school tomorrow, it should be interesting since we had a meltdown on Thursday. The day started out with complaining, the walk to school was filled with much more complaining, and when we finally arrived to school he tried to run away. I had to walk him into school and when I left he proceeded to yell loud enough that I could hear him outside. About 40 minutes later we received a call from the school saying he was still crying, I had to calm him down via phone. The rest of the day was okay, we were reassured from the teachers that a lot of kids break down on Thursday and Friday since the thrill of school is gone and they are mentally worn.

The twins are doing great, crazy as ever and seem to enjoy the 7 hours a day they get alone with us. Earlier this week Sarah watched a program about the Rangers called "Making the Cut", they watched it with her with ever growing interest. Once it was over they were helping boost each other over the couch and telling each other "You can do it!", we definitely have our hands full.

The reason I have not posted in a few days is because I worked OT all weekend, on my days off we worked as well and since it was in the sun all day (94 degrees with what felt like 100% humidity) it drained me. Hopefully within a year I will be working days somewhere. Not seeing the boys all weekend sucked, I miss them and even though I try to explain to them why I am not home, they don't get it, not fully.

Xander has been doing well, no seizures or twitches since we moved his doses around, thank God for that. To be totally honest, every time he has twitches or a seizure I feel like I have failed him. I know it is unrealistic, but it is my perception; one that I try to change, but still nags at me. I don't show or tell him that, I stay strong for him, but it is a struggle, one that I am finding easier, with time, to win. He on the other hand is a rock, refusing to allow anything to bring him down, I love that he can be so strong. We talk about his seizures and try to have as much communication on that topic as possible, we do not want him thinking he is alone in this or that he cannot talk about it.

Things are good now, hopefully one day, by the grace of God, this will all be behind us; if not we will all keep keeping on as a family.

Wednesday, August 18, 2010

I tried, but I couldn't

As I drove home from work tonight I heard a song on the radio that reminded me of our 2 months at the Mayo Clinic/St. Mary;s hospital. It was the Casting Crowns song, "Praise you in this Storm", I sat in front of my house and listened to most of it before I went inside. Lots of memories are associated with that song, most of them are in one way or another filled with hope, causing me to want to look at some of the old post.

I tried, but I couldn't, not yet. I started to read some of your encouragement, desperately needed encouragement and it was refreshing. I then saw a photo of Sarah lying (I had to look that up to make sure I was using it in the right tense) next to X after his surgery, his scar looked fresh and his head grossly swollen. I had to stop there, I am not sure I am ready to relive any part of that yet. As a matter of fact, I know I am not, talking about it is one thing, seeing it is another. Sorry, I had to get that out, it's like therapy for me, letting it out.

Xander is loving school, I know it's only day two but at least he doesn't hate it. It wears him out, Sarah told me that at the end of the day, he was really tired and grouchy. She was too, cause she was asleep by 8:15 and not in the mood to talk. The twins were crazy monkeys and wanted to wrestle all afternoon, I had to make them lunch so I could get a break, they are nonstop and feed off each others energy. I think it's funny when one of them is scared and the other will conquer that fear for him by experiencing it and telling him "See, I'm brave. It's not scary". Here's how that played out this afternoon.

I was the bad guy and I was chasing them around the house. We got into our (Sarah's and mine) bedroom and they jumped on the bed to attack me. I attacked them and grabbed Israel's toes saying "I'm gonna eat your toes!!!!!!!!!!" Iz freaked out and yelled "No Daddy, don't eat my toes!!! I'm scared Daddy NOOO!!" Zane did not skip a beat and pushed me away, laid down where Iz was, pointed his feet in the air and said "Look, Look at me" (Talking to Iz who was crying). Iz watched him as he instructed me to "Eat my toes daddy". I pretended to eat them and he proceeded to tell Iz "See, it's not scary, I'm a brave boy, It's not scary, it's funny." Being reassured by his brother he fell into place and I had 20 toes on my face.

I loved it, and I was fascinated at how much they not only loved each other, but trusted each other too. That does not always go the way I want it to, as evident by their willingness to help each other up to otherwise inaccessible locations, like the basement wall or over fences. But when they work together to conquer fears it is fun to watch.

Tuesday, August 17, 2010

The Official Day of Letting Go

     I can remember when X was a only about a month old, I would carry him around with me everywhere I went, those days are pretty much over. It seems unfair that after 5 plus years of me being able to hang out with him all day, I now am unable to. I know that I still have weekends, vacations and summer, but it is not the same, similar, but not the same. I also know that I just need to take advantage of every moment that I do have with him, I know all these things, it still sucks.

The night before his first day of school I told Sarah some feelings I had that have been eating at me. Feelings like, Did I do enough, I could have done more, I didn't take advantage of every opportunity, I shouldn't have yelled/scolded him so much, was I too hard on him, I could go on forever. My biggest issue is that I work an afternoon shift, so I was able to play/hang-out with him for 4-8 hours a day, depending on what was going on that day. Now I am reduced to my days off, and weekends. I have had lots of time to think about this, for example on average I would spend 53hrs. a week with him, again depending on the situation it could go up as much as 80 plus (Vacations) or as little as 30 (Crazy summer weeks with lots of OT and no days off work, rare but it did happen). Now on average I will see him an average of 35 hours a week, I am not one bit pleased with that. especially when you consider it may be less.

His teacher will see him about 35 hours a week guaranteed, Sarah will see him about 44 hours a week; again her hours are dependent on the situation. I told Sarah all of this and jokingly said "That means no slumber parties at friends houses and no hanging out with anyone but us, he has to stay at home until he has graduated. Part of me wishes I could actually do that.

What I didn't realize is that with him officially starting school, it also marks the official day we have to start letting go, or releasing the grip we have on him. I know it is good for him so he can see we trust him, and so that he is able to become the person he is suppose to be, his "own Man" for lack of a better term. This time has made me realize even more, how every second counts. It has also made me understand why so many people are hurting in this world.

What I am referring to is the Missing Father Role. Too many men not in the lives of their children for various reasons, too many to list, and quite frankly 99% of them no good. I say 99% due to circumstances that cannot be prevented or helped, such as death, military service or unwanted separation to name a few. Most of the excuses I have at one time or another used myself, I don't want you to think I am pointing a finger. Please keep in mind that this Blog is filled with my personal thoughts and is not aimed to be a soapbox to rip into people. It is not my intention to preach to people, or tell people they are dysfunctional in one way or another, I am only thinking outside of my head.

But it makes more sense to me as to why children, teenagers, young adults, adults, and seniors are so hurt. The role of a father, and to be brutally honest the role of a parent, has been reduced and we as a society have allowed other people to take its place. It is no wonder why our society is the way it is, we are all hurt. I love my father, he is an incredible man, but he will be the first to tell you that there were times when we were growing up, that his role was drastically reduced. That is one thing he reminds me of a lot, I can hear him "Daniel, don't get stuck being a work-a-holic, I was and I can see you going down that path". I tease him a lot because he lets the kids get away with things we would have never been allowed to get away with.

As much as I hate to admit it, with age comes wisdom, and I think he has realized that not many things are worth getting worked up about. He is always telling me, "They're kids, let them be", 80% of the time he is right. I need to let my kids be kids and enjoy them for what they are, a gift and a reminder of what is really important.

If you have kids watch them, if you don't, watch someone else's, just don't be creepy about it or the Police may be called. The one common thing about children is their desire to be loved and accepted by the ones they look up to and love the most, their Mommy and Daddy. Too often I only give a few minutes to that request and continue doing what I was doing. I pray that I would stop and love on them, play with them and actually be there for them. The dishes, work, yard work, friends, alone time, can all be done later, they will still be there 30 years from now. Your kids will be gone, off to college, busy with life, or married before you know it, so enjoy every minute, because no amount of work, or best friend can give you the same kind of devoted love as a child.

I'm off to play with the Twins

I'm glad I know Christ

It's been forever since my last Blog, sorry. What started as me taking a break so I could enjoy my family outside of the confines of a hospital turned into me not wanting to allow strangers, or even friends into the realness of our lives. I know, very unfair, but after living one way for 30 years, one does not change overnight. That is what the apology is for.

A lot has happened since the last post, too much for me to put into a few "Historical Blogs" as I like to call them. So hopefully I can sum them up in a few paragraphs and if you have any questions, you can ask. Although, I have a feeling that not many people read this anymore, which is okay by me. Who knows, maybe someone will run across this blog one day and it will be what they needed.

To date Xander has had 5 seizures, 5 too many when I look at it being a protective parent. When I look at it from the outside I say "Holy Crap, 5! That is awesome! Praise God!" and yes even as I look at it from my protective prospective I still praise God. I, like many parents, only want the best for my child.

The Twinkies have turned 3 and will be starting Pre-School, X had his first day of school on Monday (16th). It was a day of tears, even leading up to it, I would be remiss if I did not admit that I was teary eyed the night before he started school. Okay, truth be told I snuck up to his bed and slept by him till I woke up at 6am and started to get his clothes and breakfast ready.

Sarah and I are doing well, with the normal ups and downs of marriage. We try to constantly thank God for his grace and mercy in our lives and his faithfulness with Xander. We have had 3 birthdays, 4 really since one of them was the twins. The fundraiser was incredible, I wish I could get more into that, but for times sake that will have to do. I think I have a post saved on this Blogging thingy my Buddy Matt sent me. I may have to fire that bad boy up again and locate it.

One more thing that happened this summer was I had an artillery shell go off in my hand causing mostly 2nd degree burns and 2 very small areas of 3rd degree burns. I have lost some mobility, not much maybe 10%, and some feeling, which I was told would eventually come back in about a year or so. And no I was not holding it so I could throw it, a spark from lit firework lit it right where the fuse enters the firework. And yes, it was the worst physical pain I have felt to date.
My Dad had a TIA, it's kind of like a Mini-Stroke, about 2 months ago. I really think that had we not gone through our event with Xander, I would have been clueless as what to do. Because of our experience I was able to make the right decisions. Talk about scary, that man (my dad) has no idea what happened for a time span of about 12 hours. I was with him for about 7 of those, and I will NEVER forget. He is doing much better and now has my mom and me nagging him to live better and take his meds.

I have so much to write about, in regards to the last few months, but I am going to resist the urge and just go from today on after this post. One thing I will say about the last few months is, I am glad I know Christ.

Some may take that last statement as a "Crutch" statement, others may say "Amen Brother". Whatever your response is, that's what it is. For me, my communication with God was my anchor, my only connection with reality in time of calamity. He allowed me to keep calm when I should have panicked, led me to shelter in a storm, showed me what real love and friendship is in the place I would have never looked (OPD), and allowed me to watch my son walk to his first day of school. The list could go on and on, but I think you catch my drift.

More to come as the days go on.

Wednesday, April 7, 2010

The craziness continues, but in a good way

I apologize for not posting in a while, the days have been hectic to say the least. Before I begin explaining the craziness let me describe what happened the night we got home.


After receiving orders to leave we had to head to the RMH in order to finish packing up our stuff and make good on our bill. It was after we packed up my truck, with the bed completely filled, that we realized that in our excitement we had forgotten to pick up our prescriptions. So we headed back to the hospital and filled them, then our drive back began.

The drive back had become almost routine for me, but being so tired I asked Sarah to drive from Des Moines on. As we approached Omaha, X began telling us he was SO EXCITED to see his brothers and Uncle Andy. When we pulled up to the house he yelled in a very enthusiastic tone, OUR HOUSE! I think all three of us were thinking it, he was the only one to express it with perfection.

Once we parked, X jumped out and ran to his brothers, who were outside with Grandma and Grandpa (Torres), and gave them each a huge hug and smothering kiss. What followed next was nothing short of pure sweetness; hugs, kisses, tears and an overwhelming sense that this was the beginning of the end. Our friend Mindi was there as well, and as the minutes passed several of our neighbors came outside to greet us. After heading inside and beginning to unpack our friends the Tedesco’s came over as well with their kids Aiden and Brody. Xander has been friends with Aiden for almost 3 years, which is a long time when you are 5 years old.

Once all the visitors left, we looked at all the bags of items that we had brought home and realized that we came back with more than double of what we had left with. It was a bit overwhelming, but the fact we were all finally home, and together overshadowed all of it. We allowed the boys to stay up late and just soaked it all in.

Now on to the continued craziness that has thus defined our lives. The day we got back from the Mayo Clinic we found out that the Twins had colds. Those colds turned into bronchitis, and now X has started coughing as well. On top of that we used some of our tax money to buy new beds for the boys, as toddler beds no longer suited them and X needed a new bed instead of a very old hand me down.

Our choice of beds, Bunk beds, we bought the twins some full size bunk beds so they could grow into them and we wouldn’t;t have to buy a new bed anytime soon. X was jealous and opted for a raised bed with a desk underneath, plans changed after we measured it out and realized we did not have enough room. Lucky for us he is easy to please and after we showed him a futon bunkbed he changed his mind and chose that one. That was a blessing since we were able to save about $200. Now you may be wondering why we chose to do all of that considering we already had enough on our plate. Good question, I ask myself the very thing; however, remember I told you we had come back with way more than we left with, and that began our investigating into how we could make room.

The thing is for the last 18 months we have been sleeping downstairs, with X or on the couch/lovesac. We have not used our huge upstairs bedroom for so long, and decided that it would be put to better use if the boys were able to claim it as their own. It has a bathroom, that we began to gut and planned to rebuild, those plans were halted after X began having seizures. So we have since moved the boys upstairs, moved our stuff into the twins old room, and X’s old room will now be our office space for Sarah’s Pampered Chef and the boys quiet room (With books and crafts ready for them to use).

We are still reorganizing, Sarah more than I, but it is slowly coming all together. So there you have it, the reason I have not posted in a while, sick kids, rearranging the entire house and I am back to work.

I cannot express to you how incredible it feels to be back home, all of us together, and life slowly beginning to go back to normal. Only time will tell how well the surgeries went, but I thank God for everyday he doesn’t have a seizure. I thank him that there were not worse complications and that we still have our X. This whole ordeal has completely changed my perspective on life, how fragile it really is, and what is really important. There would be time in the past where the boys would want to cuddle, and for whatever reason (being tired, grumpy, or busy) I would turn them away. As it stands now, I drop whatever I am doing and take those few minutes to love on them. I pray that never changes and that the realness of this incident would not wear away. I pray that Xander’s scar would be a reminder to me of what things are really important in life. I have heard from many people in the past, as I am sure all of you have as well, that life is fragile, never has the depth of that statement rang so true for me.

I wrote this about a week ago, and just have not had time to post it. The twins are much better now, they are no longer contagious, although they are still coughing and have snotty noses. X got the cold, but is almost over it; he is still coughing, but doing well. Sarah and I have been sick for a few days, but are pressing onward. Honestly, being sick after all of this has made me laugh, two months ago I would have complained about it and been a baby about it; like I said my perspective has changed.

I give you my word that this is not the end of this site. There are people asking me if we are finished with the updates, no we are not. Things are not quite back to normal, but once that returns, the frequency of these post will return as well. We still have a long road ahead of us, but if that road looks anything like these last few days, then it has a lot less pot holes than the road we were just on.

Tuesday, March 30, 2010

Home

We are back home!!!!!!!!!!!!  I will post more on this later, we have so much house stuff to do, and things to put away. Hopefully by tonight I will have some time to share with you our reunion

Sunday, March 28, 2010

Today was a good day

What a day, X woke up in a great mood, and the day followed that route. No meltdowns, no rudeness, no irritation, no screaming; only smiles, playing outside, catching bugs, joking, laughter and love. We are about to get ready for bed, or at least begin winding down; X just told me “Man it’s getting dark outside, I can’t wait to go nite-nite”. I am assuming that the reason he even made a statement like that is because of all of the activity he was involved in, running (or attempting to), tons of walking, crawling, non-stop talking, and being a normal 5 year old boy.


I too cannot wait to go to bed, it has been a long and exciting day for Xander; meaning a long day of trying to make sure he doesn’t get hurt, and making sure he doesn’t get hurt while making it not so obvious that I am doing that. I finally took a shower today the funny thing is I drove up here with only one set of clothes, and I am wearing those today. No deodorant, and no more new shirts means that Sarah is out right now looking for some deodorant and at least a new shirt since I have one more set of shorts.

If you follow us on face book you can see pictures of our outdoor adventure in the hospital courtyard. If not I am sorry, but I am unable to download photos here since our camera situation has not changed. I was planning on buying Sarah a new one when I drove back home, that was not possible since I had no idea how hard it would be to be a single parent. I have no idea how some of those single parents do it, work and take care of the kids, it wore me out.

Hopefully our journey here ends tomorrow, I am really going to push for us to go home. Thanks for your prayers, as evident by the type of days we have had since we let you all know what was going on, God has been faithful and they are working.

Saturday, March 27, 2010

Oh what a night

Well, what an interesting turn of events; last night after I got home I was just about to lay down to sleep when the home phone rang. It was 3am, and I immediately knew that whoever was calling was not calling with good news. I picked up the phone and saw the called ID had a Mayo Clinic number, my stomach dropped like I had just swallowed an anvil. I said “Hello”, and that is when Sarah began telling me how things had slowed down for a while, then progressively became worse. She went on to tell me that the Dr.’s again told her they had no idea what was going on and that his unresponsive state was of concern. X had been waking up periodically, screaming at the top of his lungs, then falling back asleep; they were unable to shake (Not literally) him out of it, and Sarah said I should try to come up.


After explaining things to my parents, who were staying the night to watch the Twinkies, I grabbed a bag, threw a few clothes in it, kissed the boys and headed to my truck. I hopped on the interstate, called a few friends, asking them to pray; Sarah called me about 30 minutes into the drive and we spoke some more. About an hour into the drive my sleep depravation hit me and I started to struggle to stay awake. Having been on numerous road trips I have developed some interesting methods to stay awake, they all worked until I was 5 miles from Des Moines. I knew that I wasn’t going to make it so I pulled over, I am still unsure where, found a lonely gas station and parked in the back corner. I fully expected to wake up by daybreak and did not set my alarm, I also was so tired I fell asleep without locking my doors (smart, I know). When I woke up it was 8:40 and people were parked close to my truck and walking nearby, I can only imagine what they were thinking. Being slightly embarrassed, but indebted to the gas station I refueled and continued on.

I made it to the hospital at 11:40 and entered to room to a sweet boy and an exhausted Mother, hugs and kisses, then more explanation of what had occurred the last 24hrs. When I first heard of what had happened I immediately thought X was having some type of withdrawal from the OxyCodone and Morphine, Sarah did not address that because she was told it was a night terror and the meds made it harder for him to break out of it. They also said he was unresponsive afterward because of the medications, one of the Dr.’s was annoyed at the fact he was still getting these painkillers on a consistent basis. I spoke to another Dr. about my concerns, and he did say that, while it was unlikely he was having a withdrawal, it was very likely that his extremely odd behavior was due to the medications he was getting. They have since stopping giving him those meds, although they take a while to fully exit the body, and he is now only on Tylenol.

I laid with him on his bed for about 7 hours, just holding him and loving on him; his face is still swollen, but he is handsome as usual. Sarah told me that when he wasn’t waking up screaming he was waking up asking if I had made it to the hospital yet, when I hear things like that it makes me never want to leave his side. Things seem to be much better now, he has been staying awake for longer periods of time, which is essential in our quest to leave this place, and his spirits seem to be much better.

With me being here now, Sarah has been sleeping for about 4 hours, she actually just woke up, and asked me “Where’s Katie?” Katie is her sister, I said “What?” she then said in a very annoyed tone “WHERE”S KATIE?” I said “She’s not here yet”, she replied “Oh” then went to sleep. I laughed for about 5 minutes after that because she used to do things like that all the time when we first got married. We actually got into a huge arguement after she woke up (or so I thought she did) and began having a conversation with me, it went bad fairly quick and we were arguing for about 5 minutes before she started crying. I was so annoyed, and impatient, that I ignored her and went to sleep. The next morning we talked about it and she told me that she sleepwalks and has conversations in her sleep, I knew she did the whole sleepwalking thing, although I had pictured it much differently, eyes closed and arms out. What I did not know was that she could have a halfway coherent conversation while sleeping. We ended talking it out, laughing and telling all our friends about our crazy night. I have to admit I wanted to mess with her after I figured out that she was sleep talking, instead I let her sleep, next time it will be different.

I think the most frustrating part of this whole thing is our neurology team is gone, all but one. They all took vacation at the same time, and it is now the weekend so we have to deal with others who have only read about X, and do not really know us, or him. We were expected to leave by Monday, however, I am sure that is going to be pushed back now due to recent events.

Someone asked me if I was mad at God, I told them I wasn’t, although I could see how someone in my position could be. It is beyond aggravating to see your child suffer, and continue to have things not go the right way; but I am confident that in years to come I will be able to see how the glory, peace, love and strength of God was in our lives. If I was a songwriter I would write a song about it in effort to praise him, instead I blog, although I wish I could do it more justice. If anything this time in our lives has only deepened my faith, and driven me to seek his face with more of a desire to hear what he may be trying to tell me/us.

To my friends who have walked this trial with us; thanks, I know that when we hurt, you hurt, and that when we rejoice you rejoice, I am confident that the end is near, and we will be home soon. I think that, while there may be answers, yet unknown to us, of why this last episode occurred; I cannot help to wonder if it is a final assault on us to make us turn from God, even for a moment. I am grateful, and eternally indebted to you for helping me/us keep focused and press on, thanks for sticking this one through with us.

Night terrors

I am not too sure what is going on with Xander right now other than he is having a really hard time. Besides pain that is much worse than the previous surgeries, he gave Sarah quite a scare around 730pm on Friday. He woke up with a night terror and the painkillers he was on were not helping things out. They had to call in some doctors to look at him then rushed him to get a CT Scan. Good news is that the scan showed everything was okay, in regards to his brain; the bad news is I have recieved another text in regards to Xander waking up screaming, eyes open but glazed, then falling back asleep.

Please pray that this stops and he is able to rest and recover. My sweet Xander needs to sleep and I am sure that the quicker he is out of the hospital and back home, the better he will be. We all just want him home and out of that hospital. So pray that the night terrors would quit and that he falls back on schedule so he can leave as soon as possible.

By the way Eddie is doing very well and is out of the hospital, I can't remember if I told you that or not.

Wednesday, March 24, 2010

Our last surgery, we pray

The boys and I got into town in record time despite stopping on the side of the road twice to go poop, lucky for me we have a portable potty that they were excited to use. That’s right folks the twins took a dump on the side of the road inside the van in a little potty, and they loved it. The wan was aired out in a few seconds, thanks to the 75mph wind coming through the window, and we were no worse for the wear. We had another bathroom break when I had to get gas, and one more to go pee, the funny part is it was literally a few seconds after we passed the rest stop so again I had to pull over and make use of the 32oz Burger King Cup on the side of the road. After the first trip back home I learned that when the Twinkies say I have to pee, they mean I have to pee now, and if you don’t pull over within a minute or two, I will pee myself.


Zane and Israel were so excited to see their mommy that they would start screaming with excitement while kicking their legs, thrashing their arms and chanting “Gonna see Mommy, Gonna see Xander, Mommy, Xander, ect… It was quite the drive, filled with entertainment from the back row of the van. When we arrived at the hospital they knew exactly where to go, kind of sad really, and raced to see who would push the handicap buttons (For the doors) or the elevator buttons. They knew what buttons to push and knew the exact path to take; upon reaching the 3rd floor they sprinted to the PICU. When we got to the PICU I tried to tell them to walk, to no avail, and Sarah could hear their little pitter patters and was ready to meet them at the door. What followed next was about 15 minutes of nonstop hugs, kisses and I love you(s); I am pretty sure that X didn’t let go of me for that entire time, and would randomly kiss me on whatever part of my face he could get to quickly. It felt good to be back, although no necessarily in the hospital, but with all of us together again.

Sarah and the boys went back to the RMH and X and I stayed together to catch up, unfortunately he fell asleep before we were able to do that, as his medicine kicked in, and I was left to watch TV all by myself. I was exhausted but unable to fall asleep; I stayed up until about 1:30am and then only fell asleep for about an hour before he started his itching phase. I had to wake him up, not an easy task and fought with him for about 15 minutes to take his medicine. After that I stayed awake until about 3am. I was awaken by the nurse at 5:45am and told they were going to get ready to take him in about 30 minutes; I fell back asleep until Sarah arrived around 6:55. A few minutes later the Dr.’s started to arrive and we woke X up, again he was irritated at the fact he was woken up and refused to take his “cocktail” to ease his stress. He had worked himself up into such a frenzied state that I had to pick him up and take him back to the room to calm him down; the ride to the ER was much calmer, but I knew he was a time bomb ready to explode. X picked Sarah to go with him back to the OR, I think he was still mad at me for making him calm down, and Sarah later told me he fought the “Mask” the whole way, they were forced to restrain him and he loudly expressed his disapproval.

Sarah and I went back to the RMH and slept until we were called and notified that our surgeon was ready to meet with us. We raced back to the hospital and met with our surgeon, Dr. Wetjen, and he explained to us, for the fourth time, how the operation went. No complications, everything went well, they actually washed his brain, kind of weird and gross, the reason being, his brain had the grids on for such a long time they wanted to clean it so the risk of infection would be less. Our greatest risk now, besides the seizure tricking us and being dormant, is infection. He has a higher risk of that due to the amount of operations he has had, X will remain on antibiotics for the remainder of his stay and will go home with at least a week’s supply.

I asked how many staples or stitches he received, and the Dr. looked at me with a smile and said “There are so many, that we don’t even count them”. I was a bit surprised at that, but then again I can only imagine he must be right since X has stitches on the inside and outside of his head. The stitches will be different this time, they will be nylon as opposed to dissolvable, they were all worried that dissolvable ones would not hold everything in place, again this is due to the amount to operations he has had. They explained that the stitch was an on-going stitch, like a baseball, and that this ensures a tighter hold, and less risk of unraveling. I thought “Nice, I would hate for his head to unravel on us”. His bone was fused back together and now is being held tightly by titanium plates, I asked if that was going to be an issue later in life for X-Rays, MRI’s, Plane trips (Metal detectors) ect.; he again smiled and explained that it was not going to be an issue. I asked about falling and hitting his head, he told us not to worry about it unless it is within a month of this operation; the bone is being held together so tightly that it is almost like nothing had ever happened. He went on to say that it would take a fairly hard fall to loosen the bond, but if that were to happen to take him in to be looked at. He then explained that removing the stitches was not going to be a pleasant event, yet another thing to look forward to.

For the first time ever I heard him explain to us that Xander’s case was a very odd case, and that after talking to other surgeons and Dr.’s about it they had never seen one quite like it. This was all in regards to his seizures just disappearing, I thought to myself “God please don’t let us be disappointed again, I believe this is the end of them (Seizures)”. He then told us that he was going to remain optimistic that Xander is going to be seizure free, Sarah replied something to the effect of “Yeah, we’ll just wait on that one”, and he replied “No I really think you should remain optimistic about it, this case is not like one we’ve seen before”. There was some more conversation after that, but nothing of too much importance.

We are now waiting in Xander’s PICU room, anxiously awaiting his return, Sarah is sleeping (Poor girl needs it) and I am updating this blog so all our friends and family can know what is going on. I will try to post another one this afternoon, but the internet at the hospital has been so bad, that we can only get on for a few minutes before it freezes. The staff here told us it does that from time to time due to the amount of people in the hospital trying to use it all at once. Pray for a fast and healthy recovery so we can go home and begin our normal routine again. Thanks for all of your love and support, I say it a lot, but we are really blessed to have so many great people in our lives, and loving our boy(s) with us.

Sunday, March 21, 2010

No news, Good news?

This must be quick, I am sorry, but I have been so busy with the twins and work; still no news on Xander, which means no seizures. So the question arises is no news good news? As far as the Dr.'s are concerned there are two schools of thought on this; the first being that the seizures are laying dormant and X will begin having his usual seizures sometime in the future. The second is better, X's brain was so irratated by the surgery that it seized more than usual, and the surgery went better than expected, meaning we now have some sort of seizure control. They never really talk about #2, mainly about #1, that is a hard pill to swallow, but we go at it day by day.

There is one more possibility, and mind you this is only my personal thought, not a Dr.'s thought. Maybe God wanted to make sure he recieved 100% of the credit for Xander's healing and allowed seizures to occur, even with the last one being a week ago, and now X is healed. I really struggle with this one, but desperately want to believe that it is possible; it is so hard to do because of the fear of feeling let down.

I cannot be long since I am limited on my time, and I am not a very fast at typing I am going to wrap this up. Please pray for Sarah who is going crazy, being there for so long without us; and continue praying for X, the itchies are driving him NUTS! I tried updating on my phone and that was a joke, so all you will get are quick ones until tuesday.

Friday, March 19, 2010

More waiting

Still no more seizures, the stress of it all feels at times overwhelming. I drove back home yesterday with the twins. Again I am without a computer, but I have plenty of friends who have offered me the use of thier computer, so I will be able to keep you all updated.

If X does not have any seizures by Wed. then we will have the grids removed and figure out the plan from there. I am not able to make this long so I would ask that you pray for Sarah, she is all alone up there and needs it as much as X. Patience, peace and direction are a few things you can pray for. No more itchies for X, and peace, he is drawing near to his breaking point and is asking to go home daily.

Eddie is doing much better, and is only recieving treatment for his kidneys every three days. If you get a chance pray for my friends daughter peyton, she is in the hospital again due to her liver. She is only a few months old, and has already undergone some serious medical treatment.

One last thing, Thanks, everyday I am reminded how truely blessed I am to be surrounded by so many great people.

Wednesday, March 17, 2010

Itches and Answers

How’s this for a post, I am pissed off, annoyed, and ready to be done with this crap. We kept X up all day, no naps and nonstop stimulation, until 930pm when he fell asleep. An hour, one friggin hour is all he slept, no more than before, and now at 1230 he has finally fell asleep again. I only had to deal with 2 hours of crying and X going crazy because he is itchy and there is nothing I can to in order to appease him. We have done everything, trust me, the list would take this entire page if I was to get into it, and my patience has been worn. I am frustrated that there is nothing I can do to help him, he cried for an hour about how he wants to be done with all of this, how he wants to have a seizure so he can go home. He told me all he wanted to do is go home, and that he didn’t understand why he was so itchy, I could do nothing about it. The only positive thing thus far has been the new nurse who did not give him Benadryl; she gave him a new medicine that should help since Benadryl only works for 15 minutes, if that.


This is the part where I would let you know how pissed I am at God, and how he does not answer prayers. Honestly, that is how I feel, nut what good is it feeding into it, I did a bit earlier tonight, and that only made me more resentful toward everything going on. It was in the middle of all of this that I realized it was these small life defining moments that have such a huge life viewing impact. If I were to continue in my “God is so unjust” thoughts I would so easily be swayed in future trials to continue in that path, until I was once again lost. I should say more bitter, resentful, and confused, lost would imply that I am not sure how to get back; if I were ever to lose focus, I would always know the way back.

I wish I knew what was going on, is it the lack of prayer, is he not suppose to be seizure free, and is this my fault somehow. Answers, that is all I want; I pray, and no answers. I ask others to pray, no answers. I read the bible, no answers jumping out there. I talk to people about what is going on, no answers. I talk to very smart Doctors, no answers. I ask for answers, NO ANSWERS!

My struggle right now is looking around at all these kids on this floor (PICU), and wondering why? I have asked everyone this question, “Why does this happen to these kids?” I have asked everyone from much respected Pastors to your average Joe, NOBODY can answer it. There are hundreds of God haters who have reason upon reason as to why God sucks in this regard, why don’t we have one reason as to why? I will be the first one to acknowledge that my sons’ condition, as crappy as it is, is not the worst one. In fact I am blessed in more ways than not. I see parents who may not have their children a month from now, I am blessed. I want to know why, it all seems so unjust, and they (the kids) are so innocent.

Who knows what is going on, I sure as hell don’t. I can tell you one thing, this sucks. On the “spiritual” side of things, I wonder if some people have quit praying, making this that much harder on us. I am not blaming anyone, in prior to going through all of this crap, I would have been one of those to quit praying or not pray as hard about it. I understand if that has happened, it’s the old “You never know until you go through it” thing. Kind of like when your parents told you “You’ll understand once you have children of your own”. Whether it pertained to how much they loved you, or how it hurt them more than it hurt you (spanking), which is SOOO not true Dad, it defiantly hurt me more than you. Back to the topic at hand, praying, I just think that prayer is so effective, and this time “feels” so much different than the first.

I am off to bed; I am much calmer now that I have had my opportunity to vent. Besides I figure I have 30 minutes of sleep before he wakes up; he is starting to itch in his sleep as I am finishing up this sentence.

Update on Eddie, he is doing much better and may be heading to rehab. Pray that goes well for him, and his nurses. Please keep praying friends, we need it, X needs it so he doesn’t go nuts due to the itchies. PRAY.

Tuesday, March 16, 2010

Overstimulation

This post will not be long for two reasons, the first one being there is no news on the Xander front, and two, I think I am going to puke. We totally over stimulated X today in effort to induce a seizure or two; the last two nights have been unpleasant to say the least. We usually wake up once every 45 minutes due to an itchy head, and stay up for an hour or so until he calms down. Other than that the last two nights have been uneventful.


I think I am going to have to go the ER tomorrow, I think I may have an ulcer, lots of the symptoms, even the very unpleasant ones. Anyway I explained what was going on to one of the nurses and she said I should go in tonight, I am waiting for tomorrow because it is so late now. I hope it's nothing, but I feel like crap, and I think all the stress has worn out my stomach. We'll find out tomorrow, hopefully I am able to tell you all that X had seizures and nothing is wrong with my stomach and bowels other than nerves. If you’re reading this before you go to bed, send out a shout to God, and ask him to move this along already. Thanks.

Monday, March 15, 2010

Comments

I have recieved a few e-mails from people wanting to comment but unable to do so. I have finally corrected this issue. So feel free to try again if at first you were unable to.

Sunday, March 14, 2010

1 down 2 to go

What an interesting day it has turned out to be, first around 1240am X has a very strong seizure, which he seemed to be awake through and yell throughout. It was a much longer seizure than past ones, this one lasted easily more than 2 minutes; the rest of the night consisted of him waking up in discomfort, it never lasted more than a minute. This happened about 4 or 5 times causing Sarah, who was sleeping with him, to have a very restless night. I took over around 7am, both of us figuring he was going to wake up soon, we were wrong, as he slept until 11am.


When asked if he remembered having a seizure he replied “No. I had a seizure? I don’t remember that.” Both of us were on edge waiting for the multitude of seizures to begin, and the stress of figuring out which medications would stop the onslaught of seizures. We have thus far been on edge for nothing as X has yet to have another seizure. The Doctors seem to be as confused as us, I am not at all pleased in this slow and confusing process; no one is to blame, and it is not because of a lack of effort, it is frustrating nonetheless. I have listened to other patients and parents of patients and am now aware of the fact that this happens in medicine more often than I realized. As mentioned in a previous post there are some people who have been in the hospital for years, others have been in and out for years; in that aspect we are definitely not alone.

I was walking down the hall today thinking of that very thing when I passed by one of the EEG recording rooms. One of the rooms caught my attention, I could hear someone yelling/crying, the closer I got the more I realized it was a boy, and there was more crying then actual words. As I walked by the room I noticed the door was open and could see a boy, about 13 years old, and an older man (Probably his father) sitting on the edge of the bed. The boy had his hands on his forehead, is face was red, and he said “I HATE MY BRAIN, WHY DOES IT HAVE TO BE LIKE THIS!” As I continued to walk and passed the door I heard a loud, “AAARRRRRGGGGGHHHHHHH!!!!” It was at this point that I received an even better understanding of how great my Xander is, and how little he complains. For the most part he just takes all of this in stride, and although he has his moments, he really is incredible.

Right now I am sitting on the bed next to him while he is watching “Tarzan” (Disney animation movie), just laying here watching TV quietly, even after 5 days of this nonsense. Yesterday I drew a face on his belly, with his bellybutton being the mouth; it was tons of fun, and even the nurses joined in. It’s things like that, that show me how fun he is to be around. I was able to hang out with the twins for about 2 hours today, then my mom showed up and we hung out with her for about an hour.

All this time with my kids makes me rethink the whole “Father Heart of God” thing, if my love for my boys pales in comparison to Gods love for us, then I have so much to learn about God. Now because I do not want this post to be 7 more paragraphs, I will save those thoughts for another day.

Again no news from my friend Eddie, I can only hope and pray that he is continuing to recover, and that there have been no setbacks. I know that it has been a long fight, but we need your prayers more now than ever, do not lose heart, as easy as that is to do. If you all could continue to press in to the throne room of heaven and ask our “Heavenly Father” to look upon Xander with favor so we can move on from this part of the journey. As of lately I have not felt like praying, the first time around that is all I did. I am not sure why this is happening, but regardless of how I feel, I am still praying. If you are in the same boat, know that you are not the only one, and that we do not rely on feelings to serve God. Keep praying, it works.

Saturday, March 13, 2010

Still No Seizures

Still no seizures, I think we all are going to go nuts. It is crazy to think that only weeks ago X was having about 10-15 seizures a day with medicine, and now on only one medicine (with a low dosage) he has not had one. I am not sure whether to be grateful or pissed off. I know what some of you may be saying, “You should be grateful, maybe he is done having seizures”, I WANT to believe that, but I am having a hard time swallowing that pill. This would be one of those cases where it’s easier said than done, and it is easier to say on the outside looking in than living through it. We have already gone through the heartbreaking rollercoaster that has surprised us more than once; I think both Sarah and I are so leery to think anything is possible.

I just want this over with now, seriously, now. Someone asked me why, I’ll give you a few reasons. 1) By the time X starts school he should be close to 100%, which is HUGE. Kids in Kindergarten live off of competition, especially boys, if this drags on then X is looking at not being anywhere near 100%, meaning racing, chasing, throwing balls and all the rest of those things will be affected. Not to mention his mental state, the surgery affects his quick thinking and spatial thinking, making school harder. 2) I do not want him having to deal with this crap any longer, it drains him. I want my carefree boy back, and this crap worries him. 3) Our family needs to fall back into a routine; the Twinkies need to see Mom, Dad and Xander for more than 30 minutes a day. I need to see them for more than 30 minutes a day, I need to wrestle with all my boys; it keeps me on my toes. 4) X is going stir crazy, cause us to go CRAZY.

We had a small surprise party for Wren, my niece, she turns 7 tomorrow. I ordered a cake for her after I asked her what she wanted; I take that back our friends the Eckersons (Travis & Stacey) ordered it for me (THANKS!). Stacey told me the only place that would do it was Hy-Vee; it was a strawberry cake with Strawberry frosting. She loved it, or she acted like she did, she said “Uncle Dan, you got me my strawberry cake with strawberry icing”, we all sang Happy Birthday and ate cake and ice cream in X’s room. After it was all over I was a bit saddened as I watched X, he had this sad look in his eye as his Mom, brothers, Auntie Deven and Cousin Wren all left. He looked back up at me and then smiled; it was almost as if he was trying to be extra brave for me. I gave him a big kiss on his face and then just chilled with him until Sarah came back.

I wish you all could see how brave X is, to read about it is one thing, to watch a 5 year old boy going through this craziness, and remain innocent and positive is inspirational to say the least. I find myself striving to be a better person/dad as I watch him; some of the nurses and Doctors have commented on how great I am with him; the truth of the matter is he draws that out in me. Anyway, I just wish you all could see his strength, it is amazing.

Tomorrow we are going to ask them what the plan of attack is if he does not have any seizures, I am a bit uneasy when I think about that. I am off to bed, his facebook account has the newest pictures if you want to see them, we are still having issues with our camera. One last thing, Digilio's, Thanks for the gift, X wsas all smiles and giggles when he opened it up. He sleeps with her next to him in bed and turns beet red when I tell the nurses that she is his crush. Keep praying for X, and still no news on Eddie.

Friday, March 12, 2010

Blah

I am sitting in this room bored out of my mind, I think having to go through this the second time around is more of a pain than the first time. We are still waiting, and waiting sucks; X has been having more Aura’s and is none to happy about that. I am pretty sure he is depressed, I can’t blame him for that; for 2 weeks he had no seizures, and the Aura’s were almost non-existent. Now he knows that we are all waiting for a seizure and today he seems really down, we are trying to lay in bed with him to cheer him up, but he is not really feeling it.


As far as everything else goes he is still bleeding from his head, the doctors say that because he is not totally closed up that will continue. He is still not eating much, I think part of that is due to the IV consistently flowing, they have only recently reduced that. He just started his crying phase and everything requiring a dramatic response, this is the patience part that is hardest for us. The most irritating part of that is it comes and goes so sporadically, it’s hard not to think he is doing it on purpose, but we know he isn’t. The twins are doing well with Auntie Deven and Cousin Wren, I stopped by earlier today and they were calling her mommy, it’s so funny.

The Doctors are all optimistic about the next few days and even the end result, I must admit that I wish that I felt the same way. This time around I just am not feeling it, I am still praying, listening to worship music, and trying to remain optimistic, but it all feels fake. Part of me wonders if I am not trying as hard this time around so I am not so disappointed, maybe I am only halfway believing for the best. Whatever the reason I wish I was more optimistic, part of the way I feel is a bit depressed, almost in anticipation for what I would dread the most, another failed attempt.

No happy post today, I am just not in the mood. I am unable to post pictures on this right now since we are having some difficulty with the battery on the camera, that should change in a day or two. That being said as soon as I get that issue resolved the post that follow should be filled with photos.

I’ll post more later if I get the chance, X is having a really hard time right now, making it next to impossible to continue. On a quick side note, my cousin Edwin and his wife Christa are now parents, their baby girl was born today. I received a picture and she is precious, congrats guys. Another side note No news about Eddie, sorry.

Thursday, March 11, 2010

Two good reasons to Pray

The day has been fairly uneventful. It started out with X not wanting to eat anything, and ended that way too. X had an MRI earlier in the day, besides being understandably irritated, and screaming bloody murder for 5 seconds, he got through it like a champ. The Radiologist had nothing but praises for him afterward, commenting that he stayed still better than 90% of the people they see.


X is bleeding a bit from his incision, it is 11pm and we are waiting to see a Dr. to make sure it is not serious, I am doubtful that it will be. The nurses have commented that he is so much more talkative this time as opposed to the last time, he even allows them to give him drinks, that was not allowed the first time. Now we wait, we wait and see what will happen, if anything. There are so many unanswered questions, and I am so fed up with it all, but handling it all in stride.

Prayer request would be that Gods will be done in X, whatever that is, and that he would eat tomorrow. He has dropped 2 medications in the last 48 hours, and is on lower levels of his other 2, I am expecting something to happen tonight since he began having his “aura” around 4 today. On a quick side note, X is still praying for a one legged man that we met a few days ago, asking that God would heal his broken leg, he gets teary eyed every time.

Since there is not much to type in regards to X, I would like to ask you to pray for a very close friend of mine. I always dub him as “The guy who showed me what it was like to be a fun “Christian”. His name is Eddie Roach. Quick history, I met him when I was in 10th grade and he was in 11th, at a church I didn’t want to be at. He asked me if I wanted to hang out after church and I said “Okay”, anything to stay out later. My dad was strict and reluctantly agreed to let Eddie drive me home. After hanging out for a bit Eddie wanted to show me where he went to drive like a madman and get “Air”. The place was fairly isolated and consisted of a stretch of road that had 3 dip/ramps along the way, it was a blast the first two times, but the third time was priceless. There was snow on the ground and Eddie being Eddie wanted to show off so he “Gave er hell”, and “hell” responded back in the way of losing control and driving 55mph through a cornfield only to get stuck about 10 feet from the road. No amount of pushing or praying would change the situation. I had a deadline, if I did not get home at that time it would literally be a DEADline for me. Eddie and I were forced to walk about a mile to the only place open, and only place period, “The Lariat” a strip club for mostly truckers. Eddie and I begged them to allow us to use the phone, and after much begging and explaining the reason for being a wet muddy mess, we were allowed one phone call. It was placed to my dad who came and not only pulled us out, but drove me home. I was sure that would be the last time I was allowed to “Hang out” with Eddie, after all that was during the time of Caller ID and he was none to thrilled about his troublemaking son calling from a strip club.

To my surprise, we were allowed to continue to hang out; I am not sure why, maybe my dad thought it was better than me getting into more serious trouble. Maybe it was because Eddie asked my dad for forgiveness right away and admitted fault, something my dad respected; whatever the reason God knew what he was doing, and we have been friends to this day.

I asked you to pray for Eddie because he contracted Malaria a little more than 2 weeks ago. Eddie is a missionary, he may not like that title, but he is. You see Eddie does what a lot of people do not do, he goes to countries that are in need of clean water and brings then water machines. Not only does he bring them water machines, but he loves on them, and if the opportunity arises he shares with them the love of Christ. I know that he is received well because before talking about the love of Christ as many people make the mistake of doing, Eddie gives it to them. It was on a trip like this, to Uganda, that Eddie was infected, and now he is fighting to be whole again.

I get updates from Eddies father, who gets them from another close friend of his, and I can tell you he has improved in ways that can only be described as “Godly”. I could tell you of countless stories that involve Eddie and this process, but I will leave you with only 1 that I only read today, and it is one that will show you the kind of man that he is. The reason I am going to share this with you, is to motivate you into prayer for someone you do not know, I hope you feel the urge and do so. While Eddie was receiving dialysis (for his kidneys) he called me and refused to go into any detail about his condition. The one thing Eddie wanted to talk about was Xander; he had visited with us back in September and knew what was going on. Eddie asked questions about X and what was going on, I answered them, but was only interested in knowing how he was, I was honestly thrilled and relieved to hear his voice. Our conversation ended in a very Eddie like manner, and that was that. I told Sarah that I had heard from him and that he sounded like he was doing so much better than we had heard.

Now as most of you know I was without a computer for a few weeks, and forgot to check my e-mail. I checked it today and discovered a bunch of new updates in regards to Eddie. I read them aloud and was taken back when I read one about our conversation. After hanging up Eddie told his mother he needed to send me a check for $1,000.00 his mother replied “I’m not sure you have $1,000.00. To which he replied “I’m not sure I have any checks”. The friend that is giving us updates then explained how that very day his mother told him that she was going to give her son $1,000.00 to give to Eddie. He went on to say that he knew Eddie was going to give it to Xander. Now he would be a fool to think that I would take that from him with all of the other people that could affect, or water machines that could buy, but that is the type of man Eddie is, incredible and inspirational. We both love Eddie so much, and like everyone that knows him, believe that he is destined for a soul changing moment, maybe this is it. At any rate, I would ask you to all pray for Eddie as you pray for our Xander, if Xander were awake right now I know that he would want you to.

Eddie has gone through some really heartbreaking trials in the last few years, I believe, along with countless others, that there is a reason for this happening. I ask you to pray not only for a physical healing, but a spiritual/soul healing as well. If I had a blog to direct you to in regards to him I would, unfortunately I do not, but I will try to keep you posted if you want. We love you all and are grateful to be surrounded by a multitude of incredible people, and like always Pray because it works.

Wednesday, March 10, 2010

More Crazy days loom ahead

I apologize for not updating sooner, I was literally being smothered by all three boys who refused to allow me time to myself. Poor Israel missed me so much he refused to leave my side, even to sleep, when I had to discipline him (Time-out) for trying to bite his brother he cried so hard I actually felt really bad. Zane screamed like a banshee when I took the elevator without him and when I went into the room without him. Xander just randomly comes up and hugs and kisses me telling me that he missed me so much he cried. It’s good to know you are loved so much.


I have some good news, X has not had a seizure in two weeks, he is on high doses of his meds., and on Dilantin, but at least his brain has been able to rest. Besides a few dozen scabs on his bed, and the occasional bloody end result, X has been doing well. He even mentioned missing his doctors, and wanting to stop by and visit with them. Now on to more current things; as I type this Sarah and I are waiting in X’s PICU room, she is sleeping and I am waiting for him to arrive. Let me fill you in on what has gone on, yesterday we had the functional MRI, that lasted 2 hours. Here is a link if you want to better understand a Functional MRI http://www.radiologyinfo.org/en/info.cfm?pg=fmribrain X did exceptionally well, the techs did say they were very impressed with his ability to do what was asked of him. We only had one meltdown, and that was resolved in a matter of minutes.

We have still not yet received the results of that test, but after meeting with both Dr. Wetjen (surgeon) and Dr. Worrall (neurologist) is was decided that the grids would be placed on his brain; which leads us to today. X and I stayed at a hotel since Auntie Deven and little Wren have blessed us with a visit, and only 5 are allowed in our room. The boys love them both, making it that much easier to leave them in their care, and I am was equally pleased to learn that Wren knew her comic book heroes, despite being a very southern lady. Now I say that not because I am being sexist, I just have never met a young girl who knew not only comic book characters, but their real identities, I was and am impressed.

On a side note, the hotel X and I stayed at was a bit of an adventure in itself. While en route to the hotel X said “YES! Me and you get to stay in a Hotel! No loud boys yelling…..No mommy yelling at me (In a very mommy like voice) ‘Xander why are you doing that, stop it?’ Just me and my daddy.” I laughed so hard, I told him “Yup no more yellers”. When we finally arrived I was trying hard to be optimistic about the place, but it was really hard to do; the place looked like a mix between a 1970’s B horror movie, and a cheap adult film site. I made sure I kept X very close by as we walked to our room, anytime he went to touch something I would grab him and pull him back. I was going to leave when I opened up our room, but X was so excited he started jumping from bed to bed squealing; I figured “Ehh, this will just be another good story to tell him later.”, so we stayed. The hotel bathroom smelled like really bad feet, all my law enforcement friends will know exactly what I am talking about, the weird part was it was only the tub.

I let X play around for a bit, then washed his head with that red anti-bacterial soap; or as I called it “Superman Soap”, he bought it making it easier for me. After that we settled down and 4:40 came quicker than we expected.

Once we got to the hospital X was happy as usual, and made the nurses laugh; we saw a few people we knew (Dr.’s and nurses) and he was sure to hug them all. Once again he asked me to go with him to the surgery room, and once again I had to watch as he fought every second of being put to sleep. No tears this time, for me, I am not sure what is going on. I sort of feel numb about the whole thing, maybe because this is the second time around. At any rate, no tears, Sarah on the other hand, has been crying quite a bit, I am guessing because she has not had a break from this whole thing and is now at her breaking point.

I will post more later, pictures will come as well. We all know how these next few days go, so I should be able to keep you all up to date. The both of us as honestly not looking forward to seeing X is so much pain again. As always thank you to all who have been praying for us and have blessed us with gifts. To all my blue friends, thanks, you are like family.

OKAY quick very up to the minute update: He is out of surgery and in our room. He is in more pain than the last time, but at least that part is over. I can tell already it is going to be a long night. The functional MRI was inconclusive, we just found that out as well, that really stinks but hopefully we can get it figured out without that. The internet connection here is very touchy, there are times we have it and other times the floor is shut off, so that is why I am not able to always post as soon as I want to.