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.

Way too much info.

I would like to thank my parents who graciously helped every one of our nurses, our doctor’s, our visitors as well as my family; they bought us a bathroom spray. I know some people may not want to hear this, so if I was you I would skip down to paragraph #4; but it is a real issue and must not be ignored. I have yet to meet one person on this earth that does not go #2; if you know of one I must meet him/her. It goes by many names such as Dropping a deuce, going boom boom, Dropping the kids off at the pool, Making a black eel and laying bricks, I could go on and on but I think you get the point.

Our only source of good food, and my IBS

I have avoided doing the dirty deed as much as possible in our room, but I am only a man, and my family was their when my IBS refused to allow me to run to another room. As my luck would have it the nurse entered the room as I was exiting the bathroom, I was behind her and could only make an expression of horror and embarrassment as I screamed silently. This caused my entire family to forcibly hold in their laughter, which resulted in many red faces and odd spurts of air escaping. I shut the door as soon as possible, to no avail; it had been released, for all in the room to take part in.

The next day (Valentines) my sweet mother came into the room and handed me a bag filled with candy for the boys, a stick of deodorant for me (I couldn't find mine for a day) and the holiest of holies for a bathroom, Bathroom spray. It has been used numerous times since then, by me and Xander, who prides himself on having to use it, I am sure the nurses of St. Mary's hospital are forever indebted to my mother, and Glade. I know way to much info.

Now onto what you really want to hear, Xander is doing great, he is trying to walk by himself, causing me to have numerous heart attacks (because he is so wobbly), and making me feel very uneasy. I am just really worried that he will fall and hit his head, which would be horrific to say the least. He is healing well, and his spirits are about as good as they can be for being stuck in a hospital for 2 weeks, yeah it's been two weeks already. We should be going home today, instead we are re-testing, ahhh such is life. We have been trying to find other things to do with Xander besides watch TV, but our options are limited, so any suggestions would be great, keep in mind his right arm mobility is limited, and his right hand is still extremely weak, making him very frustrated when he cannot do things. We are trying to involve his right hand in everything we do, but like the therapist tell us, you have to make it fun, and it's okay for him to use his left hand when he gets really frustrated.

X Knocked out after his 2nd Therapy session of the day

The Twinkies are doing a lot better now that they get to see Mommy and Daddy everyday (we are switching nights with them), and it helps having Nana Judi here too. The Twinkies are mastering their manipulating powers at the RMH, I was able to see this first hand one day, I'll explain. I walked into the RMH and they were handed cookies by the front desk girls, they grabbed them nonchalantly and sheepishly smiled as they swooned over them. After I threw up in my mouth, I headed upstairs to feed them lunch; they were already eating their cookies and not wanting their lunch, so they cried when I took the cookies away. An older gentleman, on staff, came up to me and started telling me how hard it is on these boys, with all of the changes going on, the boys must have sensed he was advocating for them and continued to cry. I am not so easily swayed, but can play this game as well, I picked Israel up and held him, explaining to the man I understood, as I stroked my sons hair. As soon as he got on the elevator I set him down, they had stopped crying, and I explained to them if they ever wanted to eat another cookie again, they had to finish their sandwiches. They gave me a "I didn't know you were a 10th degree master of trickery" look, and tried to pout. I walked to the trashcan, cookies in hand, and explained to them I was serious; they could tell so they quit crying and took large bites.

Don't let these faces fool you (and yes this is an older photo)

The MEG scan has been brought up and is still an option; I am not sure where we are going to go with that. There is so much to explain, and frankly I do not feel like repeating it all, Sarah and I have been going over this all day. Here is what I will tell you about it, they do not have it here, but it is in the Twin Cities Hospital, they said the best place to go is a hospital in Alabama; they claim they have the most accurate translations. Insurance companies are a pain in the @ss when dealing with the MEG, and can take 6 months or more before approving it; we do not have 6 months. Six months is way too far out, that brings us into the new school year, and then it takes another month or so for them to translate it. Xander would have a seizure every 15-30 minutes without meds. and that would cause serious brain issues, his meds are able to hold them back a bit, but his body rips through the meds, causing the Dr.'s to figure out new "cocktails" for him. X has no idea how serious his seizures have become, but 6 months could hurt him so much more, and cause new "Seizure Highways" to develop. So that is what we are looking at, in a very tiny nutshell.

A good piece of news in regards to all of this re-testing, we know Dilantin is able to make him not seize for a period of time, so we will be able to get a Spect-scan done. Here is a link to what Wiki says, Mayo has a link to it as well, but I think this one is easier to read http://en.wikipedia.org/wiki/Single_photon_emission_computed_tomography We were not able to have this test completed the first time, since he was having so many seizures, and none of the meds were stopping it, so hopefully this will show them if they were just not aggressive enough.

X's therapy artwork

We are in a new room again, although it is not really a new room, it is actually the first room we ever stayed at in this hospital, it feels weird. Keep X in your prayers this week, specifically the next 3 days, he really hates these test, and his sensitive skin blisters with the glue they attach the electrodes with. We love you all, and thank you for all of your support.

Valentines Day, in the hospital

I am so frustrated, besides Xander having his first seizure in days, this morning, the weekend team is living up to the reputation they have with us of being incompetent. Well maybe not incompetent, but defiantly annoying and a bit on the knee-jerk reaction side. Xander takes 120mg of Dilantin a day, the nurse (Our least favorite so far, and the first one to be a repeat nurse for us) came in and told me that the weekend Dr.'s want to move it up to 200mg a dose, 400mg a day! that is like a 180% increase; I am not good at math so I am prob. wrong, but it's a lot. I told the nurse I wasn't going to let her give him that high of a dose without talking to one of them, she seemed okay with it, which worked well for her since any resistance would have only resulted in her having the worst day of her career.


I am no longer in the mood to dance the dance we dance; between new nurses everyday (with the exception of today), and weekend Dr.'s I have reached my threshold, even if for only today. This morning after telling the night nurse what his seizure looked like, the weekend neurologist came in about 20 minutes later and asked me the same question. I had to hold my tongue because I said "You know what....” I held it there, took a breath and explained the seizure again. What would have followed would have been "...why don't you quit being lazy, leave this room and ask the nurse or read her notes, and quit wasting my time.” Maybe it is the rough night’s sleep, or the fact that every weekend we deal with Dr.'s who are not on X's team, and seem to guess at what to do, but I have had it.

Maybe this is why I am going nuts, these are our only views

It is now the afternoon, I spoke to the neurologist this morning and we are raising his dose one time in the morning (by 30mg) and long-term at night (by 30mg), they said they understood my concern. I am not sure if they really did, or if they were annoyed, either way they listened. X had Therapy this morning and since Sarah and I went to catch a bite to eat, he chose Uncle Andy to go with him, thanks Uncle Andy. My parents, titi, and Uncle Andy all left this afternoon; we still have Nana Judi with us, and we are grateful for that.

More Wonder Place Artwork sent to X

We were made aware of some newer technology recently; it relates to seizures and seems to be the real deal. It is called a MEG Scanner, I am not yet sure that they have one at this Mayo, but we know they have one in AZ and FL. I looked on-line to see if there were any other places that have it, and wouldn't you know it; the University of Nebraska Medical Hospital in Omaha, NE has one. If this is an option for us we are going to have Xander tested on it, it is really hard to explain, so here is the link If you check it out    http://abcnews.go.com/GMA/OnCall/sixty-seizures-brain-scan-detects-source/story?id=9730383    I am sure you will be as amazed as we are.

I almost forgot to mention it is Valentine’s Day, Happy Valentines! Sarah and I joke about our romantic day together in the hospital. I told her that I was going to buy some floating candles and set the bath in the hospital room. I told her after that we could order some sort of processed meat from the cafeteria, and I would draw the curtains and we could put the X to sleep in his bed and the twins on the sofa bed. Then we could finish the night by calling the nurse if we needed anything else; she laughed, so then I told her "Yea, I was just kidding" and laughed it off too. Just kidding, we both laughed about it, it is what it is, and being strong for each other is the gift we give each other right now. Although I can hear some girls saying “No you need to do something special for her”, I understand that and I won’t even argue that point because it is valid and she deserves that. So I made her a Valentine with the crafts upstairs.

X and his Crush 17yr.old Selena Gomez

I have to figure out some way X can send a message to Selena Gomez (Actress) his not so secret crush, I think he would be blown away if she even sent him some sort of thing back (I know it will be from her "people" and not her), he has the biggest crush on her.

Love and Hope

As I was about to go to sleep I prayed for my Xander, I couldn't help but look at how handsome he is, despite his still swollen face. I am so thankful to have him here, he is such an example of strength to me, and he is only 5. As time goes on I continue to hear stories of how X has impacted people, of how people who normally don't pray are praying, and those who have not sought God for years are now looking again. I love that, I hope that one day he can look back and see how instrumental he was to God in drawing his people to his side. I am proud to be his father, to be able to raise him and watch him grow.


I cannot stop thinking about how much I love him, even now as I type this I stare at his beautiful face, and thank God for his blessing named Xander. This sweet boy, with a heart of gold makes me a better man; I strive for excellence in order for him to be the best. I try to keep his innocence as long as possible, that is why I try not to curse in front of him, why I talk about the goodness of God, why I try to watch wholesome TV around him, and listen to Christian radio with him; to preserve the innocence he came into the world with. Not too long from now I am going to be talking about how grown up he is; it was only yesterday that I held him in my arms, and fed him a bottle. I can vividly recall him crying in the night, and I can still see the look in his eyes when I rescued him from falling off of whatever object he had climbed.

This little boy will soon become a man, I am held to a promise I made to God to raise him correctly; I hope he is grateful for that, as I am to my dad. Mistakes will be made, but I pray I am quick to ask for forgiveness. I was so clueless to what I was signing up for when I wanted to have children, the love, joys, smiles, laughter, pains and heartaches, all of which I would never give up.

There is something about life lessons with children that help me understand the Father Heart of God; those of you that have been parents for a longer period of time know exactly what I am talking about. After having children of your own it helps you understand that if you are mad at God, you can yell and scream about it, because he is going to continue to love you. I can think of a handful of times where Xander would scream at me and the few times he told me he hated me. There was never one minute that my love waned; there was never one millisecond that I chose not to love him because he said hurtful things. It was actually the opposite, I wanted to love him more, and I wanted to make him feel my love. Sometimes when he is at his peak of anger, sobbing, yelling and kicking I softly start singing a song to him that I have sung since his birth. He starts to slow down and I start to rub his back; next thing you know I am holding him, whispering how much I love him, and he is calming down. It is in those moments that I realize how much more God must love us, he is a good God.

I thank him because I know that the very illustration described above has happened with me countless times. I am not worthy of a love that great, yet I am freely given it, and so much more. If my love for my 3 sons pales in comparison with the love our Lord has for us, I do not fully understand love. I cannot imagine anything greater, and I want to know more, I trust in God for this reason; I trust in him because of his love.

I have been asked in the past "If you had to pick one, who do you love more Xander, Zane or Israel?' I didn't answer, the way I explain my love is the way I heard a pastor explain his love for his children "I love them all like I love my fingers; I wouldn't want to live without one". Cheesy, yes, true, definitely. I guess what I am saying as I fall asleep is I love my boys, all of them, and I have this feeling like God is trying to teach me that he loves all of us so much deeper than we could possibly imagine. I am reminded of that every time I walk by a child in this hospital with a missing limb, or on chemo, and their parent is following them with a love and a pain in their eye. I want to tell them to hold onto hope, no matter how hard it seems hold on to.

If you want a direction to pray in, pray for hope. At times it seems as if hope is a lost cause here, a non-existent thing; pray that patients, parents, family and friends would feel the hope that is available. There are times I walk the halls and look into rooms and all I see is despair, fear or pain; rare are the times I see hope. I know from my time here that hope can be quickly lost, and hard to find when things go awry, so pray for hope. As always I am indebted to you all for your support in this time, and remember your prayers are not only affecting us, but a multitude of people as they hear X's story.

I couldn't help but take a photo to show you.

Another day, another WONDERful nurse

This is how he lives

The last few days have been fairly uneventful, besides the annoyance of a new nurse in the morning and again at night every day, if that is the worst of our problems, we gladly accept it. I read of few of the post, and can chuckle at the fact that I am complaining about new nurses and not a serious medical issue.

This is after our Helicopter Tour (Take a good look at it Nick)

Therapy has been going well; X is making progress every day and the Therapist all wish he was on their floor to work with him more consistently. Walking has improved, for X it means he is headed towards more of the freedom and independence that he once had, for me it means that after the next surgeries I know he can recover. It is a very disturbing feeling watching your 5 year old learn to walk and talk again. He was talking at 10 months and walking at 14 months, only until recently has he slowed down; there is a certain amount of grieving that I force back as I watch his rehabilitation process. As I watch Xander rehab. I am able to see how different he is than most adults. I would be more focused on what I was once able to do, he is more focused on the task at hand; I have yet to hear Xander say "This sucks, I used to be able to walk, talk, and use my right arm/hand, and now I can't". I see how intensely he focuses, and is proud when he is able to accomplish the simplest of tasks; how he looks to see if I am watching him, and the twinkle in his eye when he see that I am.

Some new gifts

NINJA WARS!!!

Xander is trying so hard to do things on his own that we are forced to keep a very close eye on him, even when he is sitting down. Yesterday Xander was scooting around on the ground with his brothers and almost lost his balance, just the thought of him falling on the ground and hitting his head sent shivers down my spine. This is one of the many times where allowing independence must be balanced with being cautious, something that we are looking to figure out ourselves. After all of the recent events I would like nothing more than to keep him in a bubble, safe from all of the world’s harms, but that is not what makes Xander, Xander. If you have been over to our house you would know what I am talking about, the long distance love-sac toss, extreme wrestling, and non-stop brother attacks; Xander is wild at heart and temporary weakness will not stop him.

Hanging with Family

Today we had a slew of visitors, my parents, Titi and Uncle Andy, and Nana Judy; it is nice to have family here to talk to, and it is good for X to see them all. One thing is certain when it comes to being so far away from home, it can get lonely; but that is the sacrifice we make in order to have some of the best care. We are not totally alone out here; we always have the Eckersons, who have treated us like we have the same last name. We receive visits from them daily, and even good home-cooked meals; I tell them all the time thank-you, but that seems so menial.

X and Travis Aka: Travelbug

We did take a Helicopter tour today, sadly I did not have my camera with me. Xander had a blast walking around the Helicopter, and sitting in the pilots seat. The twins were trying to climb on everything that was marked "Do not climb", I am glad we had all the help we did, otherwise I would probably be paying for a new helicopter. I mentioned that X made a video for everyone, while it is not the best, it was free. here is the link to see it  http://www.youtube.com/watch?v=3mNvk9dLT1A&feature=youtube_gdata    The bad thing about it is you cannot hear the questions he is anwering, we are going to send a copy to X's preschool so they can see him.
Since there is not much to talk about I want to mention Xander’s Preschool "The Wonder Place". Earlier I had mentioned that I loved that place, and now I want to expound on that. Xander goes to this pre-school that is only blocks from our house and it is attached to the Dundee Presbyterian Church, the teachers are great, and he has learned so much there. One thing you should try to picture, if you can, is me walking into this nice church with very nice people; my hair was longer than, and I had facial hair, not exactly the typical cliental they had. One thing I will say is that they were always nice, I am usually quiet dropping X off or picking him up so I am sure it may have been perceived as rudeness, but most nights I do not fall asleep until 2, so I am just tired, and not a morning person.

Going on a walk with the Boys

It was too precious not to have a picture taken

Okay I am rambling, to the point. Ms. Benedix and all of the other teachers have been with Xander since he was a month shy of being 3. Just this last year they gave him an Indian name for Thanksgiving, they explained that some Native American Tribes would not name their children until they were older, and would name them something appropriate to their personality. The name they chose for Xander was Tender Tiger, when Sarah and I heard this our hearts melted, they really knew our Xander, that name says it all.

X picked this hat out himself

Prior to us leaving for these surgeries, Ms. Benedix had spoken to Sarah and explained that they were willing to help out with X even more, since he was falling due to his seizures. If that was not enough, they have helped him with using his right hand, which was growing weaker by the day, and informing us of anything abnormal. It was not a huge surprise when they threw a party before he left for these recent surgeries. We came with our cameras in tow to take photos of all his friends so we could hang them in his room. The cameras would not be needed since they had already done the same thing days earlier, making X his own photo album with all his little friends. The teachers then explained that X would be receiving mail from his classmates during his hospital stay; I was able to stop the tears then, only because I had not yet broke my emotional barrier. We have since received that mail, a banner pictured in the previous post, and personal notes from each classmate; and we have been informed that there will be more. I think it shows another example of how God already paved the path for him, and the teachers there are the very essence of the word.

X trying to make me cringe, he is pushing his squishy head in.

I am going to say one more thing; Dundee Presbyterian Church is really Loving God and Sharing Jesus Christ. If I was the Pastor of that church I would be proud of my congregation as I am sure that God is smiling down at them. We do not attend that church, but I have been made aware of a group of individuals from that church that are planning on providing meals for us when we return. How rare is that? People who have no family ties to you offering to help you in your time of need, sacrificing their time in order to help. That is what being a Christian is all about, being Christ like; again I am forced to throw away any thoughts of moving from that neighborhood aside, and accept the fact that I will be in that house forever.

Some of his Hospital gifts

We have received care packages from numerous people, and there have been questions on a "fund". That is in the process of being created, and as soon as I get the final word on that I will post it on here. If all goes well we should be home around the first or second week of March, we cannot wait to see you all.

How the Day goes

Last night was the first night I left Xander's side in a week; I had to tell him I was going to leave, and that his mom and Mindi were going to have a sleep over with him. He was not too sure about it at first, but after some more talking he allowed me to leave, I was torn about leaving, but I really needed sleep. I have been going on 3-4 hrs. of sleep for the last week, sometimes not sleeping at all. Xander has wanted nothing but his daddy this entire time, nurses, doctors, aids, they were all the enemy, even his mommy could only console him about 10% of the time. Up until yesterday I had not noticed how tired I was, or hungry; it really hit me after the Neurologist left, and I was shaking, I couldn't hold my hand still and I felt like throwing up. I took a 5 hour energy and when the 5 hour energy worked for like 10 minutes, I knew there was no getting around sleep this time. As I walked into the Ronald McDonald house to feed the twins and go to sleep, it felt as if I was on a fast elevator, I was getting all of these crazy sensations in my head, and I knew I had to sleep. It wasn't long before I was cutting logs, and woke up with crazy twins trying to cuddle with me in the morning.

We are MAD!

There has been a lot of emotions, good news followed by bad, encouragement, and help this last week. I was going to try to keep everyone up to date the last two days, but there were a few things more important than that. The first was spending time with the family, and the second was my sleep. Since I am feeling 100 times better, I will let you know what is going on.

The day after the Doctors told us that the surgery didn't work and that the blood work would have to show low levels of Dilantin to consider otherwise, we found out the results. All of the Doctors were super excited to inform us that the levels of Dilantin were untraceable, meaning that it was X stopping seizures not the Meds. Sarah was so excited that she hugged all of the neurologist; I told them that I was not sure how to feel. At this point, after hearing so many changing results I was so cautious to feel excited about good news, I let them know I was glad to hear good news, but cautiously optimistic. They all agreed that I should be, and that we have a long way to go yet, they advised that they were going to take him off Dilantin that day.

The Banner X's Pre-School made him

The rest of the day I struggled with telling anyone what they had told us, I wanted to share the news, but after so many ups and downs I was really hesitant, besides they were going to take him off Dilantin still. I think I spoke to about 5 people telling them what the Dr.'s said; it was much later in the day too. The struggle whether to believe them or not raged on inside, a little after midnight I told myself to just believe and went to sleep.

Photos hanging by his TV

It was 3:04am when I awoke to my boy having his first seizure, I was so pissed off, I remember thinking "Gosh dang it, why, why did they have to tell us that crap". I was talking him through it, and I noticed that that seizure was a bit different; I kept on telling him to breath, but was confused. After X came to, he started crying and I told him it was going to be okay, he looked at me, still crying and said "You didn't promise me this". I said "What? I didn't promise you what, seizures?" He said "Yeah". I had thought that I had felt my heart crushed to its fullest capacity until I heard those words, it felt like the last bit of life in it had been squeezed out. For weeks we had been telling him that the doctors were going to take his seizures out, that he was going to hurt for a bit (headaches ect.) but he was going to be better, and not have any more seizures. He was not going to have to wear his helmet anymore, and that one day he wouldn't have to take his meds. I did not promise him that after all of his pain, suffering, inability to use his arm/leg/face, and discomfort he would have seizures 83hrs. and 14 minutes later.

5 Days after 2nd surgery

I was trying to be hopeful that it was a minor setback but one after another after another seizure followed, until we were up to 11 and it was 9am.By that point I was so mad, I had already been more demanding than ever when the IV personnel came in and when they didn't do what I had asked I was sure to let everyone know I better not see them again, ever. Sarah was giving me that "Please stop being a jerk" look, but I gave her the "I don't care if they think I am being a jerk, the next person that makes my boy cry I am going to punch in the face" look. The Dr.'s ordered more Dilantin, a heavy dose, and came to see us about 2 hrs. later. They told us that they were confused, that they were not sure what happened. They explained that maybe they had not been aggressive enough during the resection, but that it was always better to take out less brain than more, because you can never put it back in. They said that the main center of the seizures may have overshadowed the smaller ones, they said there may be more abnormalities that are too small to see, or undetectable in the MRI scans. They said it could be a whole bunch of things, but they would all be guesses until they could start testing again.

The Scar

I was still so hurt, and anger was the easiest emotion to allow to surface, in anger I started crying, and explained how pissed I was. I think I was more telling them how messed up I felt more than yelling at them, I told them that it was unfair that we were that 14% and that it was not supposed to be like that, and now they want us to try again. One of the Dr.'s was teary eyed, as another explained that I should be mad, and that they were mad as well, and confused, but determined to help Xander live a normal life. They told us that as far as Xander's case went, it was supposed to be a slam dunk, and we should be getting ready to go home, they did not want to tell us that in the beginning in case something happened, and it did. They explained that for the next week, X would focus on therapy, and that would allow his head swelling to decrease. The retesting process would begin on Tuesday, and be complete in a week. After all the test are assessed, they would consider surgery to place the grids on whatever part of the brain needed to be addressed.

Playtime

The reason they want to be so aggressive is because the sooner the better, the scarring is minimal, and as far as X's emotional state it is better for him as well. The way things are now, it looks like our best option because otherwise X has a seizure every 20-30 minutes. Sweet happy X is a lot more emotional lately, I can't blame him, I would be a mess. He is still having his aura multiple times a day, and scared that he is going to have more seizures. He still wants to take pictures of his incision, or look in the mirror at it; he is still talking about how cute nurses are, and how much he like Selena Gomez (actress). I try my hardest to be in an upbeat mood, I know that if I act all depressed, he can feed off of that, and that will in turn affect our healing process.

Showing off our ability to use our hand

So that brings us to today, and today has been uneventful. I came in after sleeping at the RMH, and was greeted by a ginormous smile. As soon as I got there Sarah started to tell me how emotional Xander had been, and that I was the only one that could calm him. She left with Mindi, who had drove up to see Xander and spent the night at the hospital, and the twins; leaving me with Xander. We hung out, talked and I started talking to him about how he needed to let nurses and doctors help him. He sort of rolled his eyes and continued flipping the channels and playing with the bed controls.

The Paparazzi took this photo of Zane

The rest of the say consisted of him and I hanging out, and talking about everything that was going on. When the Therapist came in he flipped out, I talked to him and told him I couldn’t do it all, because I didn't know how to do it all. He told me he would calm down and try, he tried for 10 seconds before freaking out because she was trying to help him walk. He was about 15 feet from me and stomped all the way to me, I kept walking away, and the therapist kept saying Xander your working harder then I had planned on working you. He threw himself to the ground and I sat next to him and calmed him down by telling him to breath. I have this certain way I talk to my kids when it is serious, they know I want to talk to them like that when I say "Okay, Let’s talk" I told him that, and we started talking, for about 3 minutes. I explained that it was really important that he tried with these ladies, and that I was going to be there to protect him if he needed me to. I was able to talk him into it, but barely; he did some soccer kicks with both legs and started crying again about 10 minutes later. The therapist said he did great, and that they would try again tomorrow.

What the hidden camera sees

After that X and I continued to tour the hospital, and went up to the PICU to visit our nurses up there. X and I visited with the family who were our neighbors in the PICU, the ones with the twin girls, good news there, one baby has been released (today) and the other could be a matter of a few days. I was able to really see one today, they are so tiny and precious, it made me miss the crazy twins. The other family we met while in the waiting room went home today, their family will be walking a tough road ahead; please keep them in your prayers as well.

We are lying in bed, X and I, and I am trying to get him to quit messing with the keyboard. The nurses and staff have kept him up and it is now 10pm, as much as we want to get into a routine we cannot, somebody always wants to barge in and do blood work, test levels of whatever or take vitals. I know they are doing their job but it is frustrating at times, here’s how the day goes.

The twins refuse to let mom out of their sight

Wake up around 8am, eat breakfast about an hour later, play for a bit while nurses switch, usually resulting in us repeating the story of why we are here, what his seizures look like, how well he takes medicine, where are we from, and how long have we been here. That is followed by vitals, meds, and visits from people saying they will be by later. Then Xander's team comes in and talks to us, and usually his surgeon follows, next thing you know it is 10:30 and he needs to get out of his room. Before we can leave we need more meds, and then we start going for a walk. We run into a doctor or a Therapist who tells us they have one more patient before they can see him, and they never some back around (Happened 3 times now), so I just keep walking and don't return. Lunch is not ordered because his medicine takes away his appetite, so we nap from 12-2; we wake up take meds and order food; which arrives the same time the therapist does who now is ready and X is not. We struggle through that and end up meeting the twins for more play time, which results in fighting because one of the twins will not stop telling Xander that they love him. That is broken up by meds, and that is followed by a crazy dinner, and Sarah and I trying to plan the next day. Sarah and the twins leave, X and I wind down, more meds are taken, vitals and last minute checks are completed. X and I fight about what we are going to watch, I start typing, he starts getting tired and begins messing with stuff, I turn off the TV, he falls asleep, I finish typing, then fall asleep. I wake up to a nurse asking if he needs pain meds, I ask him, he gets mad, it's 50/50 to whether or not he does, and we fall asleep. He twitches, or moves; I wake up and pray till I fall asleep. I wake up because a new nurse is here and we repeat the process.

Coloring wooden cars, and the floor

This post will probably be the most detailed and longest until sometime next week, we just don't have much yet. As far as prayer for X goes, it stays the same, healing so he can live a good life, and not paralysis. I love you all and thanks for the encouragement as always. I hope you know that I keep you all updated because we are all family now.

Tomorrow

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

Good News, bad news, Good News, bad news...................

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.

X the SPARK

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.

Due to how sore he was we couldn't really hold him until yesterday, he said "I want to hold you"

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.

This is after eating a huge Ice Cream Sandwich

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.

This was like the 3rd smile we had gotten from him

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.

Another Ice Cream Picture, he sat up with me behind him for almost 2 hours

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.