Blog

I am going to post a very long and detailed post tomorrow, it will have everything that has gone down the last two days. Thanks for being patient, and for all of the words of encouragement, advice, and words of knowledge (from your own experiences). I have recieved so much encouragement, and recieved calls from people I would have never thought would call or encourage. That in itself was enough to lift me up, let alone my son progressing so well after a major surgery. I/we have been going on this crazy rollercoaster ride and although we are far from over, it is nice to have this part finished. This last day and a half I have taken the advice of allowing myself to process this, and feel what is going on; as a result I did not do another post (until this one) and I did not Facebook. It felt weird but the extra time alone was what I needed. My phone was burning from the content ringing and texts, but I ignored them all, I just wanted to be alone, if only for a bit.

I am back, and ready to share our continued journey. I do want to say that if it were not for all of you, I am sure that we would not be where we are now, you have helped us so much, and in so many ways. I wish I could post a video here to show you his progress, but that is all for the FB followers I guess. One more thing, to THE WONDER PLACE (X’s Preschool), if you read this, I LOVE YOU ALL. I am going to tell everyone how great you are in the next post (I’ve been wanting to but something has always come up) but do not think for one moment I forgot how great all of you are. I know I am quite when I get my son, but we chose you to teach our son for a reason, and I do not regret it, more now than ever. And if you haven’t read X the Spark you should, I think there is a reason I wrote it.  UNTIL TOMORROW

As I type this, against my will, I want to remind you that you are getting an inside look into my heart. This is not a whining session; this is more or less my raw emotions as I try to work through them.

I am not too sure where to start, I am not crushed, far from it, but I feel a certain and very strong almost overpowering weariness. I am really tired of the ups and downs, the highs and lows, the goods quickly followed by the bad. Today the Neurologist team came in and spoke to us, the one who did all of the talking is the one who initially told us she thought there was a high chance of Rasmussen’s Syndrome. She came in with Dr. Edgar, and another guy I have never seen, they came in to check on X’s progress. While they were satisfied with his progress, she started talking about his seizures after the surgery, it was not good. She talked about how it was abnormal to see that many, and it is a cause for concern, she talked how she didn’t think it was due to the pressure or the surgery, but that he was probably going to need another surgery. Almost the opposite of what we had heard from others who were telling us not to lose hope. The more she spoke the more it hurt, this was a new hurt, this one felt like it was really numbing, numbing my emotions, and that is what I have been trying to avoid. I feel it though, the disconnection, the will to fight is not there as I type this, and I am lethargic, depressed, and sad for my son, tired, tired of this fight that seems so unjust.

I asked her flat out if what she was trying to say is that the surgery was not a success, she said that there was a high percentage that it did not. So I started at that point to feel like I had been kicked in the face by a giant, I felt like this was a losing battle. Deep, deep, deep in my heart I can feel it trying to fight, but all I feel like doing now is crying and feeling sad. I want to scream, break things, punch a wall, something, anything; yet I am just laying here, 2hrs. after being told this, next to a happy X watching “Overhauling” and asking me to “look, look”. He has no idea what they are talking about; it’s probably a good thing.

Sarah tells me it’s okay to feel like this, I don’t feel like it is. She tells me not to forget that she was the same Doctor who thought X had Rasmussen’s, and she was wrong then. She says “Don’t worry about it Dan, Xander and God are going to prove her wrong, I am not going to believe what she said we are going to prove her wrong”. I just sat there emotionless, I told her “I am trying to be cautiously optimistic, but I feel like that is a fool’s game, like I am setting my heart up for failure”.

I was in such a good mood because of all the progress we made yesterday, now I am trying to remember that. Dr. Wetjen came in earlier and told us since he was doing so well we could move out of the PICU, that good news seems far gone as well. I keep trying to yell at myself, like “Get over it, you need to press on”; at the same time I really want to make sure I am not stuffing my emotions

How many times can I tell my heart not to worry, and it listens, I feel like it is not going to listen this time. I am not doing facebook for today, maybe tomorrow, I don’t even feel like doing this, but there is that small part I mentioned that still wants to fight. The part that feels like weeping all the time is strong right now, I feel depressed. It is so stupid, I read my own words from other post, I can see the encouragement from others, and yet I want to stop fighting? I was up praying over X last night, maybe I am just tired, maybe I need sleep, I just do not want him in that much pain again, ever.

They say that if his levels are high (with meds) then that is the only thing stopping the seizures, if not there is still a chance he is fixed, a small one. X and I just got up to go pee, I asked him if he wanted to try and walk, he said “Um hum” so we did it, he fought his way to the bathroom, about 12 feet away. I held him as he weakly but courageously limped in, I can feel God telling me “That is how I am with you now” I hope that is God, I hope so.

I am sure that this comes down to something in my life that I need to fix, like wanting to know everything right away. I just want to know if this worked or not so I can move on. I do not want to feel like this, this helplessness to fix my son.

Lord, you are mighty and able to do wondrous things, I lay it all at your feet, it is yours. This battle belongs to you; If you tell me to fight, fight I will If you tell me to stay still, still will I be My son back to you I give, the father of all Lord the enemy lays in wait and attacks in the shadow Be my vindication, strike them down with your sword I need you Lord, Be our strength, our hope I praise you and all you do. I speak of your amazing love and your infallible truth. I sing praises of the works of your hands. In my weakness carry me, ignite the flame that burns within.

David said it best when he would simply say Help Lord.

In the last 48 hours we have been blessed beyond measure, encouraged to no end, prayed for with fervor, and heard some amazing stories. Xander has come along nicely since his surgery, while he is still on a very strong dose of anti-epileptic medicine, I am cautiously optimistic that he will not fall into that 14%. I have been going through in my head plans of how to handle different scenarios that may take place, if I do not do this, I will not have direction when the time comes. I am holding onto that hope, sometimes I feel like I am more grasping for it. When those times come I am always encouraged by you, our family, whether by blood or not.

I am, very simply put, amazed; God has been using our sweet child to light a spark in the hearts of men. He has been burning and stirring the heart of his people to move in one accord. Let me clarify something about when I say his people, I mean his people, of all denominations. I grew up going to Four-Square and Assemblies of God churches, and now we have been attending a Christian Non-Denominational Church for almost the last year. I do not believe for one moment, nor could you ever convince me, that only one branch of those many denominations, Protestant or Catholic, are going to heaven. God reaches his people in every single one of them; the e-mails, texts, on-line conversations and phone calls I have received over the last week are proof of that.

I have had numerous people tell me that because of our current situation they have prayed more now than in years, in some cases EVER! I have received encouragement from people that have absolutely no ties to us and some that have some ties to us, but have never met us. I know of Catholics, Lutherans, Methodist, Assemblies of God, Four-Square, Presbyterian, and Non-Denom. that are praying for X; I am sure there are other too. Last night I was told of an absolutely incredible story; I do not want to do it injustice so I hope someone can post/comment on it, but I will tell you the story in a few words. Two people who were praying for Xander met after a pastor prayed for X, they go to the same church, and did not know they were praying for the same boy.

A while ago in another post “Divine Preparation” I wrote down what I thought God was telling me, I wrote “So undeserving is the family of Strong Towers, and yet I (God) love them, bless them, and allow them to fall, never abandoning them. I (God) never leave them so the wolves may devour them; I (God) set them high on a hill for all to see.” At the time I thought it was more about how God allows us to fall but does not abandon us (much like a Dad/Mom teaching their child to ride a bike). Looking at it now I can see the “set them high on a hill for all to see” part. I can see how X has been the spark God is using to draw himself near to those who he has called. I think that is amazing, our boy at 5 years old is reaching more people by just being himself, and then I did in 4 years in the Ministry. His life speaks for itself.

Now some comment on how great we are and I appreciate that, I really do; but I think most of the people we know would do the same thing. Trust me, Sarah and I feel the same way about you guys. We have had so much help from all of you, family and friends laying aside their lives, whether for a few minutes to pray, or days to help out. If it was not for you we would be in a padded room talking to the tiny monkeys holding the door shut (I have had time to think about this). I am not one that should be thought of as a great person, trust me I get too mad sometimes, I curse at work (working on that), and I say stupid things: I am one of those that God has drawn closer to because of Xander. I am not a great person, I am a man who loves God, I love God and I love my family; If Yoda was real and I met him he would say “Great are you not, blessed you are”. I am not a big Star Wars guy, but I just processed that thought in his voice, very weird.

I want to say one more thing that may have been lost or forgotten about since I posted it very briefly in the very first post. There are several reason I started this (read the first post if you want to know), but there was another “Spark” that led me to move. That “Spark” was/is a 10 year old girl named “Hannah” who went through something very similar to our X. Her parents had/have a site much like ours that walked you through their progress; they, much like us love God and serve him, so reading their journey encouraged us and I wanted to follow suit. We have never met that little girl, although I think if she knew I was calling her little I would be corrected, but she will never know how I appreciate her strength and her parents being open. Together Xander and Hannah are being used to touch lives across the Globe, two children not mega star super pastors, I love that. I am not sure of Hannah’s current condition, but I ask that all of you say a prayer for her too. I will probably never meet the Turners until we get to the other side, but when I do I am going to hug Hannah first, then her parents.

X had a long night last night, he stayed up till 2; I think he was happy to be able to see. They are trying not to do Oxycodone, only Tylenol; overall he is doing well. I should be able to post again later today on our conversation with the neuro team, his progress, and any other news. As always thank you for your prayers, God is listening.

I just realized that I had not put up a surgery #2 post, so here it is. I am going to explain what happened, and what lies ahead..

Our neurologist Dr. Wirrell, and the rest of the team were able to locate the exact spot of his seizure, the epicenter, if you will. Since that was able to be completed Dr. Wetjen (Neurosurgeon) was able to test this during the surgery, he was actually able to duplicate a seizure by messing with it. I say messing with it because I am not sure how he did it, if I had to assume it would be by sending an electrical signal to it. Dr. Wetjen told us that he was able to remove all of the problem, and almost all of the tremors (if you remember one tiny spot was in the crossover section and they did not want to risk permanete paralaysis. He told us it was a deep section, and as far as the technical side of the surgery goes, he was extremely pleased.

The part of the brain that was removed will fill with cerebal fluid, it’s really weird to think about that. I actually thought they would put like a foamy thing in there; good thing I am not a doctor. His scar was ugly, bumpy and very frankenstein like, they said that it should begin to look better and smooth out with time. They told us that it was because of the swelling, and not to worry. He gets his staples taken out in about 2 weeks or a month. The scar goes from his middle forehead, right at the hairline, to the back bump or shelf of the head and then onver to his ear and down his sideburn.

I am already telling him that his scar is awesome, that he now looks like a true ninja. I tell him that because for the last month we have been play fighting, and he always asks me to do my ninja moves. I told him that when we got home he could tell people he saved me from a band of ninja’s; he weakly smiled. I say that so if you read this you can tell him how awesome it is, if it is ever brought up. He is so sensitive to how he looks, he loves to dress nice and do his hair, so if he feels like his scar is something to be proud of he will be more confident of that around strangers.

As it stands there have been no more seizure, 20 hours since his last one.He is still doped up, has eyes that are swollen shut, almost no movement on his right side, very slurred speech and a very swollen head. Now imagine all of that and then picture this he has tried sitting up a few times on his own, but this morning before falling asleep, he tried to STAND! He was so ticked off about everything, so upset he couldn’t see and be his normal self that he said “Daddy I wanna go home’, then started to prop himself up. I thought that he wanted to sit, so I sat him up, he pushed me away, He then proceeded to try and stand up, he was growling in frustration so I held him up, and let him stand. He stood there for about a minute, then we sat him down; he fell asleep about 20 seconds after that.

We are doing a lot better today, I feel a renewed strength, and I can see that in Sarah as well. They are going to be monitoring X very closely for today and tomorrow, he has some blood inbetween his skull and brain, and he has not eaten since Tuesday. The plan for today is eat, rest, work on moving limbs, and sleep.

I don’t have anymore pictures, they would all be the same, Xander sleeping, when I get them I will post. Tomorrow I’ll let you know what they say about his subdural hematoma and his therapy.

There is not much to post now other than Xander is sleeping and has not had a seizure in almost 12 hours. While he is super drugged up,, and it would make sense that he has not had any seizures, there is a part of me that knows if it were not for God I would not be able to tell you it has been 12 hours. He still cannot move his right side of his body, his mouth, arm, fingers, leg, and toes, the doctors tell us he should recover most of it, it may take as long as 3 months. We are praying for a faster recovery, he is such a fighter and is trying so hard, I am so proud of him, he is so much stronger than I am, or could ever be. We are exhausted, I slept 5 hours tonight, that is about all I have slept in 3 days; funny that I feel refreshed on such little sleep. My buddy Nick always laughs that I am able to sleep so much at home, and am still tired throughout the day. I have trained the twins not to wake up till at least 8, so most days I get my 6-8 hours, some days they bless me and not wake up until 9 or 10; so this lack of sleep thing is a new experience.

If I could hug everyone of you, I would; you have all been our greatest help (besides God) in our toughest time. Every word of encouragement is like water to our lips, life to our souls, and peace to our aching hearts. I am a blessed man, blessed beyond measure, to be surrounded by a multitude of incredible friends and family. If I was a rich man, none of you would ever have a worry; I am not a rich man, but I do serve a just God who will repay all those who have blessed us. I am a testimony to that, we are a testimony to that, I read all the encouragement, and cannot help but think this is some of my reward for faithfully serving an awsome God, who never fails to love. Your payment for your faithfulness to our family will come, I know it, it may not be right away, but one day when you really need it, it will be there. Look at us, it has happened to us, for years I gave my all, literally, to God, I have lived a blessed life, yet I cannot help but think this is some of my reward for following him.

Now do not think I serve him for rewards, I talked to Sarah today and told her “If this ends up not working, it will not change my thoughts on God. I am still going to serve him, and raise this family knowing of his goodness. I am still going to teach our boys about God, and I am still going to follow him, I have to.” I know this is easier said than done, but when I chose to follow Christ I didn’t tell him “I will follow you as long as it is easy, and i get all I want” I told him “God I will follow you ALL my days, no matter what.” I must stand to that, God is good, no matter our circumstance. I was readng today, and this Psalms hit me hard, Pslam 6:

1O LORD, do not rebuke me in your anger

or discipline me in your wrath.
2 Be merciful to me, LORD, for I am faint;
O LORD, heal me, for my bones are in agony.
3 My soul is in anguish.
How long, O LORD, how long?
4 Turn, O LORD, and deliver me;
save me because of your unfailing love.
5 No one remembers you when he is dead.
Who praises you from the grave [b] ?
6 I am worn out from groaning;
all night long I flood my bed with weeping
and drench my couch with tears.
7 My eyes grow weak with sorrow;
they fail because of all my foes.
8 Away from me, all you who do evil,
for the LORD has heard my weeping.
9 The LORD has heard my cry for mercy;
the LORD accepts my prayer.
10 All my enemies will be ashamed and dismayed;
they will turn back in sudden disgrace.

This post is to let you all know we are still fighting, holding on to Gods promises; and like David said in Psalm 27 (one of my favorite) I am still confident of this: I will see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and take heart and wait for the LORD.

Lord I ask you would bless all those who have prayed for us and our Xander. That for evey tear lost, every minute of sleep lost, or every heartache, you would repay them in only a way you can. I know you are faithful and just in all your ways, please show our friends that. To the ones I have never met, and are praying for Xander, please bless them sevenfold. To our families who have been there from the beginning, fill them back up. Lord, our family and friends are doing what you asked, they are laying down their lives for another, for Xander; please oh Lord, repay them.

I love you all, Xander has no clue how much he is loved, hopefully one day he can catch a glimpse, as I am trying to record his days here, and keep a record of your love. Keep praying, we are not through yet, there is still hope; faith is being sure of what you hope for and certain of what you do NOT see. We miss you all.

I have changed the title to this post. It was “What the hell is going on” After hours of praying I felt the tug to change this.

It is 8:40am and Sarah and I are sitting in the room waiting for the neurology team to come in to talk to us. The very thoughts of “Did we do all this for nothing? Is all we are going to get out of this experience a huge scar, missing brain and a pissed off boy?” send a rage through me that burns to the very core of me. My sole responsibility as a father is to keep my family safe, and raise them the right way. Last night my little 5 year old boy looked at me and said “Daddy the doctors hurt me”; at the time I could accept that knowing that it was for a greater good. Is that greater good all gone? Have we made the worst decision of our lives? Is it possible that I missed Gods voice?

With all that is in me I want to take this away for my Xander, we took the path we felt would be best, covered it with a multitude of prayer from family and friends, to people that have only heard our story. What do we have to show for it? Outside looking in one would say “Stay strong, hold onto the knowledge of God, he is faithful.” I know, but put yourself in our shoes; your baby who you have loved, protected, taught, and watched grow older is in pain, so much pain that he can only whisper. He aches and is frustrated; desperately trying to be the independent boy he was 4 days ago. He tries to lift himself up, wants to “Eat food like you”, and is saying “I want to go; I don’t want to be in Minnesota”. His face is hardly the sweet face we have known for years, his head now bears the mark of a decision that we made for him. A decision we are not even sure has worked, he is like this because of us.

I am holding onto the promise that God is good, I do not want to wait until glory to see him whole. This thing has been so emotional; I have always been a very logical thinker/processer, only now I am reaching for that, trying to push the emotional thoughts aside so I can get a grip. Sarah is lying on the bed, X propped on her lap sleeping.

Have faith heart, be still and know he is God. Stand firm on the promise that God is not unattainable, but right here, holding us. Lord, I feel like this continual praying is a lack of faith on my behalf, like I do it to make myself feel better. I believe that you heard us all the first time we asked for healing, I understand that there are times we intercede, but I am tired. Help me not to listen to the thoughts that you are not listening, I know you are. Help me lead my family through this, I look to follow you, but I am not sure where you are. Help us with our doubt, and our confusion. Help Xander with his brain, make it whole, ease his pain, and help his limbs and face. Give us rest, but if you can only give us one thing, heal our son, your son. I am trying to be faithful with the gift you gave us 5 years ago; 5 years ago I promised you that I would watch over him, and raise him in the knowledge you have given me. I told you I was going to do my part here on Earth; I am having a hard time right now.

Family and dear friends, we are so undeserving of you love and faithfulness to our cause, and yet God has allowed us to be blessed by your love. I know I have been repeatedly asking for help, I at times feel bad about that since I am not in the habit of asking for help; but once again I am asking. There is a small part of me that, by desperation or faith (At this point I am not sure), feels like this is the last offensive from the enemy. Daniel prayed once for an answer and it took 21 days until an angel gave him his reply. The bible only tells us that Daniel prayed and fasted those days, it says nothing on how he felt. If I could picture those days leading to the answer, I think the Daniel of today would say something like this. D: What the heck taking so long! I’ve been praying and praying and praying, yet three weeks into this and still no answer! Is this some type of joke, am I praying so I can be ignored? Seriously, I have been faithful, what is wrong, what’s taking so long? Then in one of the most amazing ways the messenger angel arrives and speaks the word of God. Daniel falls to the ground unable to speak until the Lord gives him strength.

I think that may be happening now, I could be wrong, but I hope for that. As we waited for the Dr.’s Sarah held onto X, I was lying next to them. She then started quoting scripture: For I know the plans I have for you, Fear not for I am with you, Rest in me, the Lord is faithful, and so on. This went on and I could feel the hand of God touching us. I felt like I heard God say “This is why you hide my word in your heart, for times like this”. As we walked with X to the CT, we prayed as he grimaced with every bump, and moaned with every stop.

We sit in our room now, worship music playing, X and Momma sleeping. I hope there are no more seizures, I have faith, I believe, it cannot be due to my lack of faith, trust me. If there was anything I had to do for my boy, I would. When we hear more, we will let you know. The post will keep coming, because we need the prayer that follows it.

As I am about to post this X just had another seizure. I am going to fast, I am not telling you this to boast, but to ask you who read this to do the same. Whether it is a day, meal, or thing, this is the last thing I know to do. It is completely out of our hands, so I am going to plead my case to God.

Dr. Wetjen just came in, a great doctor/man, he said that the brain is complicated and that there are no sure answers to why this is happening. As we were talking X had another seizure, I lost count I think we are on 15, he said that it seemed as if it may be coming from his right side of his brain. Their will be more talks, and possible solutions, maybe another surgery, or who knows. I am done posting, God I am confused, why?

I pray that this is the hardest decision we ever have to make; I cannot imagine ever having to make a harder one. I will explain to you all, who have fought, prayed, cried, and rejoiced with us, how the last 24hrs have come to pass. I promise to you that, as I always try to be, I will be real, and the first order of business is this sucks.

Around 10pm last night X had his first seizure, we were so relieved, and saddened by his suffering. Sleep evaded us for most of the night, resulting in 20 minute naps here and there for a total of 2 hours sleep, if we were lucky. Around 3:30am X had his second seizure, that one was stronger, and again we continued to ask for more. We all just wanted this to end soon. Around 6:30am X had a 3rd seizure; we were able to see Gods answer to so many prayers.

The Dr. who reads his brain activity (not an EEG tech) while the test are being conducted came at exactly 7am, advising us what her role was in this whole thing. She was going to monitor his brain while sending signals to the affected areas. As soon as she finished setting up 5 world class (Literally) neurologist came in to start the test. There were a total of 9 medical personnel in the room at one point, a bit overwhelming, that’s why I counted.

X was so tired, but put up with their test. I had to keep him awake as he fought sleep, at first we counted to 20, like 100 times. They told us that the test may induce a seizure and it did, a bad one, he ended up ripping out the IV and the arterial line. They had to give him some pretty strong drugs that made him super drowsy. We were almost done, but he fell asleep, we were so close I had to start thinking of creative ways to keep him up. Chest rubs, and prodding from the doctors and mommy were not working well, he just would open his eyes and fall back asleep. I stepped back in and told him what we were going to do, never being one to want to disappoint his daddy, X rose to the occasion (only with one eye) and fought his best to stay up. I had him repeating silly things like how much he loved Spiderman, superman and others, about how great of a dad I was, I had him tell sleep to go away, and that we would get back to him as soon as the test were over. Like the incredibly amazing boy that he is he finished the test. The Dr.’s told us that he did better than older kids, and 45 year olds.

They all left to talk about his results, about 20 minutes later, it seemed more like seconds, they returned and told us what was to be expected. They told us that X has a good chance of being in that 86%, and that they had a good localized area. The thing of it is, it is up in the air on him having permanent weakness on his right hand, it may go away, or it may be forever. They told us the same applied for his face, although the likelihood of that was around 5%. I heard that and I could feel my airway tighten as my heart was trying to escape.

The Dr.’s explained that his while his brain has these certain areas that are in charge of specific tasks, along the borders of these areas there are some crossovers. Being that he is so young and his brain is not yet as hard wired as ours, he was likely to recover from any cross over effect. At this point tears are streaming from my eyes, unable to control them I just stood there, motionless. I don’t even think I was breathing at this point, not until one of the neurologists who have worked with us gently touched my back and rubbed it. I took a deep breath and walked away, I had to, I was giving my all not to erupt in a classical wail fest. I stood in the corner, hanging on to their every word as they took the next minute to wrap up, they asked us what we wanted to do. I took a deep breath, and asked for 5 minutes, thinking about that now it seems ridiculous, 5 minutes. Uhhh, can I get 5 minutes, just like on TV to make a huge decision, thanks. What? They said that they would give us 30 minutes and left.

Sarah walked over to me and I started sobbing, not crying, or small tears but deep down, empty the reservoirs, sobbing. I let it go, as Sarah and I held each other and cried. After a few minutes of this we started talking and both felt like we have been walking on this path for a reason, God has led us here, let’s pray and keep going. Everything you could imagine went through my mind, is he going to hate me for this, is it the right choice, will this stop him from being married, how will kids treat him, and so on and so on.

Then in the midst of all of this I heard a song in my head that I have not heard in YEARS.

The pathway is broken
And The signs are unclear
And I don’t know the reason why You brought me here
But just because You love me the way that You do
I’m gonna walk through the valley
If You want me to

Chorus:
Cause I’m not who I was
When I took my first step
And I’m clinging to the promise You’re not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that’s not my home
But You never said it would be easy
You only said I’d never go alone

So When the whole world turns against me
And I’m all by myself
And I can’t hear You answer my cries for help
I’ll remember the suffering Your love put You through
And I will go through the valley If You want me to

I told Sarah, and we cried a bit more, I would point out parts of that song that mean something to me, but it all does right now. I think God was talking to me in a way he knew I would understand, at that very moment. A short time later the Dr.’s came in with Dr. Wetjen and went over all that would be involved. Dr. Wetjen would be removing an area that was not only wide, but deep, all who were there told us again and again it was the best thing for him to live a good life.

One of the Dr.’s (Terrance Edgar, the same one who tried to console me earlier) later pulled us aside and told us in his South African Accent “You know most people think of us as just physicians, but I have 6 children, I am a father, like a lot of us. I know how it feels to be a father. You are making the best decision for your son to have a better life than the one he would have otherwise had.” I fought back more tears (where these all come from I do not know), and said thanks. He then explained something fascinating.

He told us that had we allowed this to progress Xander would have started building Seizure super-highways. That in turn would have resulted in a next to impossible seizure operation since the brain would be set in its ways and led to more and more seizures throughout his life. He said the technical term for it is called “Kindling” referring to how one seizure sets off a chain of events leading to others. He advised that X was fortunate not to have that yet, and if it was there, it was minimal, and this operation should stop it. We were able to get a photo with Dr. Wetjen and X before they left.

We were left to our thoughts and our Xander; Sarah lay in the bed next to him, resting with her firstborn. It reminded me of a lioness resting with her cub, sleeping, yet watchful for any harm that may come to pass. I wanted to lie with them, but not wanting to spoil the moment for her allowed them to rest together. A few minutes later we would be told that we had to get ready to go. They moved him to a new bed, as he moaned with pain, and we all headed to the O.R. for hopefully the last time.

Once there he was allowed to pick who he wanted to go in with him, to all of our surprise he picked me. I think it has to do with the fact that I am his protector, the one who he looks to for safety, if I say it’s okay, then it must be okay. Sarah is more of the nurturer, and that is why as time went on, and he needed more nurturing he asked for her. This time we went in and there were no problems, he was scared, I could hear his little heart beating faster and faster. I just held his hand and told him it was going to be okay. Before he went under he said in a very unsteady voice “Daddy, are you going to be here the whole time, watching me?” I told him I would be there till they kicked me out, and I would be there when he woke up.

I left him sleeping and as I walked out the door the Dr.’s said “He’ll be okay Dad, we’ll take care of him like he’s our own”. I replied “I know”. After all that was why we were here, to have the best care in the world. God has been more than faithful to us through this time, and we praise him for his love. Some may ask why this happened to X if God is so good. I do not know, maybe because we live in a fallen world, and as a result of that bad stuff happens. I really don’t know, but I know that throughout this entire process he has walked with us, at times carrying us, and showing us through family and friends that he is faithful and just. 10 lifetimes of lessons have been learned due to this, and hopefully someone out therecan read this and renew their faith. That would be an incredible way our little X could be used by God.

Praying for seizures is odd, it definitely does not feel natural, and there are times when Sarah and I laugh about it. The reality is we really need X to have one now; in order to move on Doctors need to see a few typical seizures, the spikes are not enough. The few spikes that he has had do show a consistent focal area, and that particular area has a very good percentage of being able to be removed; but until they see a few seizures they are not going to risk anything.

Praise God that every time someone new (nurses, techs. ect.) finds out that Dr. Wetjen is our surgeon they boast on his ability as a surgeon. We met with him early this morning (along with 4 others) and Sarah and I talked about how you could just feel his gift of healing. It really is quite amazing how that works; think about someone that you have met and you were like “(Insert Name) is awesome, they are totally an incredible (Whatever), that is his/her calling”. I associate that most with a great speaker or pastor, Billy Graham for instance, when I listened to him live in St. Louis it was like that. All of our Dr.’s are walking in their gifts, whether they know it or not, and our X is that much more blessed because of that.

There is not much to report here other than we are just waiting. Patience has become an intricate part of our lives, having to learn all about it (patience) the last few months; I think we would be pulling out our hair had we not walked that one out. Along those lines I feel like I am on an all fruit diet, Holy Spirit fruit, with patience (commonly miscategorized as a virtue) and peace being our main staple. I just read Galatians 5 and I am going to keep what I wrote, but I want to emphasize that Sarah and I, being covered in prayer, are living off all of them.

So now we wait, X is not in a ton of pain, but there are times he is in some real discomfort. He has not been crying, but moaning, those long winded, not very loud but strike the core of your heart moans. Again those times are not a constant, but they are there. I have been asked by friends and family how we are doing; the answer is good, all things considering great. Since being here we have had families ask us how we do it, we tell them all about you all, and your support, we talk about God and his faithfulness, but most here can feel and see that with us. Actions speak louder than words, and such has been the case with us.

Nurses and techs. speak freely with us about prayer and faith, I believe that is because the Holy Spirit is covering us, due to all of your prayers, and they have this sense that they can speak freely. They talk to us about how incredible X is, and that he is one of the sweetest boys they have ever met, along with how handsome he is, and how he gets it from his dad. Okay so I threw that last part in, but they do say that he has such a sweet spirit about him.

This is a picture showing the mass of wires coming from his head and recording his electrical activity.

I think it is amazing that we both can be so calm, and filled with peace in this, our most difficult trial ever. It is now 6:30pm and no seizures, we all are hoping that he will have some tonight, and not go 21 days like another patient that was here a few months ago. Grandma and the Twinkies stopped by to visit; X was not too thrilled, but then fell asleep. Tonight before you eat supper or before you lay your head down to sleep please ask God to allow X to have a seizure or 4. Thanks, if we get anymore news I’ll let you know.

Grandma watching over Xander

Little brothers watching big brother. (They both took turns praying for him earlier in the day)

OK, Pictures for the last post are up. I only put a few in since it is already midnight. We have had X back with us since a little after 6pm. He pretty much has been sleeping this whole time, and waking up every time I get up saying in a very weak voice “Daddy”. I finally asked him if I could get up around 11:30 so I could eat, he finally said OK and asked for his mommy. I could tell she was relieved when he finally asked for her (the first time all day), a half hour later she is asleep with him, and I am updating.

While we were waiting in the waiting room we met two incredible couples. The first couple’s 6 year old son was having surgery (Just before X) on his brain for a cancerous tumor. They were so strong, Sarah spoke to them more than I did, but I did hear them talking about God. Their son’s name is Daniel, if you could say a quick prayer for them. They told us they found out about this lemon size tumor in his brain in October, they have been addressing it with chemo, and now it is the size of a walnut, but in a very compromising location.

The second family we met back in December. They have twin girls that are now 8 weeks old, they were born 7 weeks early. They are back after being home for 3 weeks because of RSV; they are having a really hard time, with not a lot of answers. If you could say a quick prayer for Hope and Hailey as well.

When X came into the room we both tried to keep our composure, he was sleeping, and we both were fighting the tears. When he finally opened his eyes, we both became teary eyed, X smiled at us and tried to get up. I whispered to him “Daddy’s here, go back to sleep, you are so brave”, he smiled and continued sleeping. The nurses in our rooms were starting to get teary eyed as well, after finishing up the important things they needed to X woke up asked for daddy, they gave me the thumbs up for laying with him.

That is pretty much what we have been doing since then. I will tell you this; Dr. Wetjen met with us after the surgery and said all went well. We were told that he (X) started spiking (Increases in electrical activity) immediately, and he thought that we should be doing the second surgery by Friday if he keeps it up. The EEG Tech. said that they place 93 electrodes on his brain, yeah 93 is not a typo.

He does have a slight fever; we were told that is normal after surgery. X also has to have blood, 1/2 pint, they said he was low but okay; 1/2 pint to him is like one pint to us. Our nurses are incredible, and love on him every time they come in. My new phone was mailed express and I received it today, tomorrow I will have it programmed and running. We are not allowed to take calls in our room, so if you call or text you will have to wait until we are able to step out.

I am sorry if this post is not very informative, there is not too much right now, and I am really tired. All day I had this feeling in my chest like my heart was being slowly ripped in half, it has since gone away, but it killed me knowing that X was going to be forever changed (Physically if nothing else) by days end. Once again thank you all so so much for all your support, prayers and comments. It is an incredible testimony to the love of God, and the faithfulness of our friends who intercede to him on our behalf.

Last night was very long, very little sleep, and the sleep we did get was not very restful. I will say that we both feel OK, which may be due in part to the fact we are running on adrenaline. This morning we woke up around 8am and got ready to go to St. Mary’s Hospital; my mom, who came up with us to watch the twins (YEAH for Grandma), took care of the Twinkies for us. Since we are only one block from the hospital we were able to leave at 8:50 and checked in at 8:54, we then waited for about a half hour before we were taken up.

They explained the reason we waited so long was because there were no more rooms available, we were warned about that yesterday. There are so many surgeries happening today that it is literally one in and one out. We got to our room only to be asked to wait in the waiting area since the room had not been cleaned yet. Sarah asked for a child life nurse to talk with X while we waited for our room (Child life helps explain things to your kid, and helps make them comfortable while they stay at the hospital. Every single one of them has been phenomenal). She explained it all again to X, who was only interested in knowing if there was going to be a pokey shot and smelling his cherry mask (below Pic.).

The same time we were told our room was ready the EEG tech had come to talk to us; we all walked to the room, and the millions of questions began. Once 20 questions ended, we were told it was time to go; it was literally that fast, I think it helped a bit since we didn’t have a lot of time to think about it. X was rolled into the pre-operating room, and the nurse (Grandma Beth) came in and loved on him some. Just in case you are wondering, the people working here are still the best ever, constantly talking to him, holding his hand, running their hands through his hair (or stubble), and reassuring us. After she was done the anesthesiologist came in and talk to him (Played with his trucks too), and talked to us.

They asked him who was going to go into the operating room with him, and he pointed at me. Now I was happy about this, but also aware of how much Sarah wanted to be there. I tried to talk him into having his mommy go, but as soon as I started doing that Sarah bravely said “Dan you go, he wants you to go so go.” I took a big swallow and said OK; at this point I was not sure I could hold onto the damn of water in my eyes. About 15 minutes later I was handed a blue suit and we were on our way. I held onto X’s hand while we rolled through the hallway, passing at least 4 other hallways, all of them with numerous doors that led to operating rooms. There were so many operating rooms, everywhere you looked there was another one, and it seemed like a dream.

When we arrived at our O.R. I had to let go of his hand and put on my mask. I entered and took a DEEP breath; my little X was lying on the O.R. table and just nervously smiling. I stood next to him and held his hand, he looked up and smiled, like in relief that I was there. He was then asked to smell the bubblegum mask and they talked to him about the movie “UP”. They told him that the more deep breaths he took the more likely he was going to float away, he started taking bigger breaths. Just before he was totally out he started shaking, I started crying, the nurses explained it was normal, and that he was going out, his body was just reacting to the anesthesia. I gave him a kiss good-bye, tears rolling down my face, and walked out. The nurse talked to me the whole way out, but I didn’t respond due to fear that I would lose my composure and bawl. I made it to Sarah who was crying, and we went to our room. All the nurses told us we needed to get out and eat; we did; now we are just waiting for updates.

He went into surgery at 1:20 and is expected to be out around 4 or 5. I will post more as the day goes on, I want to make sure I keep you all updated since you are all in this with us. Keep on checking this as I will be updating at least once a day. I would have pictures on this one, but I seemed to have left the card reader, and the usb cord; so until I am able to find that you will be forced to only read about it. I will re-update this post with pictures when I find it.