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.

I'm back

I am back in computer land, I was without one for about 2 weeks, 2 very long weeks. My computer was dropped and the power cord was shoved into the computer, not allowing me to recharge it; we are still not sure if we are going to pay the $250 to fix it considering we bought it at Nebraska Furniture Mart on black Friday for $150.

This will not be a long post, I just wanted to let everyone know I am back, and the updates willl continue. I flew into Rochester yesterday it was great seeing the family again. The boys had no idea that they were picking me up so the looks on thier faces was priceless; Zane just pointed at me with a bewildered look, Iz stared and X smiled. I had to sit in the back because they all wanted me to hold them.

X is doing so much better than when I left, he is walking, it is still a very hippish walk, but walking; his head is almost swollen free, and his speech is improving daily. I am a bit saddened to think about a week from now, and what that may bring.

The twinkies are so much bigger and talking like grown men, minus the cussing. Sarah is relieved that I am back, and now able to take off the strait jacket. I will post more tomorrow, I am still soaking in the family time, and have laundry to help out with.

still no computer

Sorry, still no computer and there is no way I am posting from this blackberry. March 9th he has his functional MRI and based on how that goes the 10th could be surgery or not. Once I get my computer back I'll post more info.

More test

Sorry there has been no post lately, I am without a computer and am not to sure when I am getting mine back (It's in for repairs). I just wanted to let you know that there is news, I cannot get into details, as my time is limited, but I can quickly let you know what is going on.

The Neurologist called and they had their meeting today, where X was presented. In a nutshell (Again I do not have a lot of time) they want to do more test on him, since they have the time because the surgeon is gone next week. This test will allow them to make sure of where the seizures are coming from. I cannot remember the type of MRI it is, but if it works, they will be able to make sure the seizures are not coming from his primary motor area.

If they are coming from his primary motor area and not the supplementary motor area surgery would be a no go. Instead we are left with the Vagus Nerve Stimulator. Here is a link so you can understand what it does and is http://en.wikipedia.org/wiki/Vagus_nerve_stimulation . My personal choice would be surgery because then we should be done with this whole thing (But we all know how that can go), I just want this to be over for him.

I am also stuck with trying to figure out if I am going to continue to really express my feelings on this site; it's a long story I am not going to get into but I may be only posting updates on this. My intention in writing this blog was to keep family and close friends up to date on our situation, afterall I am expressing my true feelings and revealing a lot of who I am in this, I am not too comfortable sharing those raw emotions with the world so I am trying to figure out what I will be doing.

Sarah is alone with the kids, and I am back at work, she is having a hard time since her day is just as packed as ever, and I am forced to go back to work. I know wome may wonder why I am forced, because I do not have unlimited vacation time. Work has been great about this whole thing, incredible really, but I am forced to make the hard choice of going back to work in effort to save some vacation days in case something else goes wrong in the future, because you never know.

So the direction of prayer for us is that X is able to do this test with Sarah, and Sarah does not go insane because of all the kids. I am doing well since I have my neighborhood friends feeding me, I actually miss the organized chaos.

Not much to update

This is not going to be a long post, there is not much to update. Xander seems to be having panic attacks or something like that, he becomes really distressed everytime someone new comes in, whether it is a doctor or a nurse. He is only comfortable with his usual nurses or doctors. I am going to try to talk the Dr.'s into letting us do outpatient therapy, only for X's sake; he has had it here, we all have.

There is nothing else to talk about really, besides that X and I are watching Planet Hulk and it is awesome. I will post pictures and have more answers as far as what direction we are going in tomorrow. We just keep praying and asking for direction, hopefully the path is clear for us when we have to choose.

Until tomorrow friends

A spiritual war

It is11:45pm on a Friday, X has been asleep for the last hour and a half (His last meds are at 10), and I have just finished watching a movie my friend Jesse recommended, Ink. I really haven't had the time to watch this movie until now, I tried watching it a few days ago, but I was too distracted by every move X made in the night. I watched the entire thing tonight on Hulu and I was really affected by this movie; and no I am not turning this site into a movie critic site. I do want to tell you if you get a chance to watch it, you should, my eyes were water logged because of the last 5 minutes of the movie. The acting itself was ok, sometimes really sub-par, but the storyline and the meaning are incredible and the last 5 minutes are worth the entire movie. I think that is what Jesse told me about the movie after he watched it. Seriously, you should watch it; it made me think about the spiritual war that may be happening in our situation.


I have written about it in past post, wondering if angels were watching us as we walked the halls, how they are sent by God to keep us safe; there is also another side to it as well, that is the evil side. The enemy, whose sole purpose is destruction, most people do not like talking about this part and I may lose some people because I am talking about it, but it is just as real as God is, just not as powerful, or ever-lasting. I know that God is the same yesterday, today and forever, I know that he has his healing hand over every hospital, and that his angels guard us from evil. But for the last few days I have been having this overwhelming sense that there is a very real, and very serious spiritual war going on, and Xander is in the middle of it. Now I am not going off the deep end thinking that Xander’s soul is at stake, or the future of the world rest on his well being, far from that. But I do believe that Xander, along with every other person going through whatever kind of suffering, is being fought for. What I am trying to say is that everyone has this war going on, and although we may be more aware of it during certain time in our lives as opposed to others, it is still going on.

My personal opinion, again MY personal opinion, Xander is destined for something great, I am not sure what that looks like, but I really think it is true. Maybe his greatness will be him becoming a missionary in a remote part of the world where no one knows what he does but God. Maybe he will be an incredible business man who is an example of a Godly man to everyone who meets him, or maybe he will be one of the greatest dads to ever live. Whatever it is, I know it will be great; I think that this heart-wrenching time in our lives has only made these feelings more concrete in my heart. After watching this movie it has made this spiritual aspect even more of a reality, and added more fuel to my tired soul, again I will be praying with fervor. To be honest I was slowing down, I am not sure why, it could be a number of reasons, but the fact is I have slowed down. No more, I am back, the warrior within has rested and is once again awake, ready to battle.

Xander is doing well, he had his electrodes removed today, and I am fairly sure that we are test free, at least until Monday. My sweet, sweet Xander is such a trooper, I have found myself stuck between wanting to keep him very safe, and allowing him his much deserved freedom. As far as what is going on, I am not sure I want to talk about that all yet, at least not until we have a better understanding of it, and where we want to go with it. I will say this, the core of the seizures was not removed the first time, the aftershocks (kindling) were, but the epicenter was not. They think they know where it is now, but they have to be sure so that is why we have been doing more tests, and reviewing past test as well as the surgery. They have called other respected neurologist for possible suggestions, and by next week we should have another plan laid out, they did tell us that they needed to hit a homerun this next time, for Xander. The possibilities they talked to us about are scary, to say the least, for us, but I am sure we will know what to do when the time comes.

I want to say one more thing about this whole spiritual war thing I feel is going on, I want to ask those out there who pray, to pray against despair. A week ago I wrote a post called Love and Hope; it was a little more than a week ago I felt this nagging about a spiritual war, which is why I wrote that post. I asked you who follow this to pray for hope, I will further explain why. There is this fictional book called "This Present Darkness" I read it years ago, but I was reminded of it again about 10 days ago. The book explains how there are evil lords in charge of certain building, such as the Courthouse, jails, some churches, and even hospitals. What gets me, even though it is a fictional book, is how true that could be, and one night when I was praying I felt like there was despair in this hospital and I couldn't help wonder if it was like the book talked about. So again I ask you all to pray for hope, so that despair gets kicked in the teeth. I could be wrong, after all, God is the only one who truly knows, but prayer either way can never hurt.

This time in my life, this season, has really stripped me down. I feel so vulnerable, so weak, so small, yet at the same time I feel strengthened, able to move mountains and loved; it is strange how that works, very strange. I wish I could share with you all how God has blessed me during the hardest time in my life, I am not talking about explaining it to you, I am talking about the blessing my spirit has received. When I say "God is my only hope" there is such conviction there I think my heart could explode, I wish I could share that with you. Writing about the goodness of God seems so blah, I feel like if I had to tell you about it in the way that would best describe it, it would be dancing. It's crazy, but dancing, David in 2nd Samuel 6:14 danced, he was showing everyone how he felt about God in the best way, it sounds crazy, but I get it.

Lord you are a great God, so incredible; words are not worthy to describe you. I am blessed to be called by your name, to have you walk with me in my darkest hour. Every time my enemies have called me out to battle, you are with me. They are forced to tremble and run in your presence. There are times I may ask where you are at, but I know you are near. I am a victorious because you are by my side, I am a blessed man, and one look at my family proves it. Lord I ask that you would fill the hearts of your faithful; I ask that you would meet them where they are at. For all of those praying for a 5 year old boy named Xander, bless them, bless them in a way they have to acknowledge it is from you. I thank you for all of those fighting with us; please refill those who are empty or weak. I ask for a victory in this battle that is taking place, and I stand firm on you word that says you are my shepherd; I shall not want. You make me to lie down in green pastures: and you lead me beside the still waters. You restore my soul: and lead me in the paths of righteousness for your name's sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. You prepare a table before me in the presence of my enemies: you anoint my head with oil; my cup runs over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD forever.

Stay strong family and friends, this is a war, many battles are fought, some may feel like losses, but the final battle fought to determine the war belongs to the Lord. I know this sounds really "Chrisitanese" and I hate that it does, but there is no way around it. Love ya all.

A time for SCREAMS!!!!

Xander eating Bacon, the food he eats with every meal because he can

Sorry about not putting up a post the last two days, we are still down to one laptop, I had a friend attempt to fix the one with the broken ac line, and 2 hours later it pushed back in, oh well. It is 8am, I have been in this room for 20 minutes and all I can hear is the boy next door screaming; this is a continuance of yesterday, and Sarah told me the entire day. I am not sure what he is in for but he is not happy, he has been screaming for the better part of 8 hours; his vocal chords are bound to break down, I hope.

Smiling despite his aggrevation

Sarah spent the night with X again, we were taking turns this week, but she really wanted to stay with him again last night, so I conceded. I am not sure how many seizures he has had, but it looks like he is on his second recording sheet, with nothing but auras on it, no seizures. It makes me wonder what is going on, I am preparing myself for another rollercoaster ride, I am fairly sure that the doctors thought EEG monitoring would be over by now, I think we all did. I am sure of one thing, X is glad not to have his head wrapped up like a mummy; the Dr.'s said as long as he didn't pick at the electrodes he could be mummy-free.

Opening up the two care packages that came in, with his momma

Again the last few days have been uneventful, besides the ever constant screaming coming from the room next door. Thankfully as I wrote this, we have since moved, to our fourth room; this one is much nicer, roomier, and has a 40" flat screen TV. The only bad thing is, while he is being monitored, there was no internet access. So here's what happened today.....

We came into our new room, and we made ourselves at home, Sarah left, after being with him for 2 days, and I took over. Our waiting continued, Xander fell asleep for and woke up an hour later since the nurse wanted to flush his IV. It made no sense since she asked if she could and I said no, I let him be pissed at her, I figured both deserved it. At this time one of the techs talked about quitting since he had not had a seizure, I told him we were going to wait as long as possible. It was almost 2:30 and I wasn't sure we were going to get what we wanted, a seizure; as I was trying to update his status on FB via cell phone, he had one. The funny thing was I was posting that he was not having any and we needed prayer so this could be all over with, for his sake. They were able to inject him with the stuff necessary, and away we went to the scan.

This was his face when Sarah showed him what his Preschool made him

He was not happy about it and made sure everyone knew about it, including our new nurse who referred to herself only as "grandma", a self proclaimed title that would hold absolutely no weight in the eyes of Xander. Every time she tried to console him while en route to the scan, he would tell her "Leave me alone, no I want my daddy". This was also the case for every other nurse and assistant, I explained that he was in no mood to be friendly, and that he was sick of all of this, they said they understood. He fought going under, as usual, and screamed till his eyes rolled back, I felt horrible watching him so upset.

He was so excited to open and read his Valentines

When he came to, it was pretty much the same story; anyone who tried to help him was greeted by a loud and extended "NO!" and if they did not heed his warning it was followed by a swinging limb. I tried to calm him, but it was pointless as long as nurses were there; they got the point and finally left, only then was I able to calm him down. About 10 minutes later "grandma" nurse came in and asked if she could give him his meds. I told her "If you could wait that would be great" another nurse said "Yeah he just calmed him down" and again I was ignored, she said "Grandma's just going to clean your IV then give you medicine". The response to that was the same response he had given nurses all day, and week really, "NO!” That was followed by more crying, she tried to console him, and he yelled louder, again I let them both hash it out since she was so insistent, and he deserved to yell if he was going to be ignored. I only intervened when she "Shhh'd" him, I am sure you all know this about me by now, but there MAY be one or two people who can SHH any of my kids while I am around, and a nurse who has known him 2 hours cannot. She looked over to me and I gave her a death stare that would have scared the grim reaper himself; she immediately left his side and I took over, calming him down a few minutes later. She got the point to leave him alone and we were able to leave recovery and go back to our room; I will say one thing about "Grandma" nurse, she is persistent, and doesn't take things personally, we are good with each other now, I think we both know she messed up and it will not happen again.

The Scar looking better

So now we are up to the minute, literally, X is waiting on the food I ordered for him watching "Hotel for Dogs" while munching on Chex mix and I am blogging. And just for good measure the screaming boy is over in the hall as well, I just heard 10 minutes of nonstop screaming, very similar to that which was heard earlier. We have had some news from the Dr.'s, however until they are more certain, I am going to hold off on telling you, it's not really good news either. One last thing, we are all in good spirits, I think we are all trying to be for each other, and because it makes it easier to deal with stuff, we have our moments, or days, but that is to be expected. Okay, I lied, one last thing; Nana Judi has been a HUGE help, she has been here for almost a week, and I know all of us will miss her when she leaves, Thanks Nana Judi.

To all our CA family and friends

To everyone who has sent us a care package, Thanks, they are helpful, and Xander loves all the letters from his friends and family, we do too.