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I will keep you all updated on how things are going tomorrow. I can’t sleep, even though I am running on 4 hours of sleep. I have X next to me cuddled up, and Iz on the other side sprawled out. These kids are just like their mom when they sleep, hot; and by hot I mean like a furnace hot.

Well only a few hours until we start this whole surgery thing, I have so many thoughts running in my mind I was lying in bed thoughtless. The silence in my head was like an annoying alarm that wakes you up; you know you have to get up but you want to keep sleeping. In the same way I know I have to process my thoughts, but I want to sleep.

We go in at 9am tomorrow, and the surgery process starts at 11ish, lasting until 4ish. Remember it is only the grid they are placing tomorrow, and the begining of the test. I will post and keep everyone updated, with pictures too.

I do want to say one thing to anyone who reads this, thanks. I thank God that I have the people in my life that I do. Some of the friends I have known for years, and others only a few months; almost all of them have been incredible. I am blessed to be surrounded by other good fathers who love their children, and understand that sometimes all that needs to be done is listening. Guys often get bad raps for not listening, not allowing each other to hurt, not being supportive, or even emotional; I can say, without batting an eye, my friends are not these guys.

I have joked, laughed, hung-out, and even fought with these guys; but I have also cried, poured out my worries and heart, and sat in silence, and I am able to tell myself “Everything is going to be alright” partly because of them. They have reassured me, listened, allowed me to hurt, emotionally connected in ways that only other good men/fathers can do.

Some of these men have helped me/us out in other ways. Financial support, travel bags, toys, and “connections” have been all sent our way. I hope you all know that if there is ever a way I can be there for you let me know, until that day comes I will ask God to bless you. I will ask him that whatever you touch may turn to gold, and that you would never be in need. That you would be the type of men that your families are proud of and boast about to others. That your boys would know that you are a Man and a Champion for them, but also a tower for them to rest in when they are weak. That your daughters would see you as the first man who loved them, and didn’t require anything from them. That your wives would see you for your strengths and not judge your weaknesses. I pray that God would keep you safe from any harm, and that other men would not speak evil of your good.

It is a bit easier for me to tell you guys this through this forum, but thanks. I really am praying that for all of you that have helped me thus far in this journey. You have made this so much easier on me, and my family by being as supportive as you have been, and offering the help that you have. I could never repay you, that is why I am asking God in the above prayer to. That is what I have to offer, besides manual labor, and my collection of shot glasses.

PS. my phone is broken, but I should be getting a new one in a day or two. Until then you can call my wifes phone or I will try to post our room phone later. I am also not spell checking this so if it is bad, sorry, I am waking IZ up with the typing—–Later

I would have done this earlier, but it was a long day, plus I am still recovering. So this post will be more pictures than reading, the pictures tell a better story than I can.

My hair was an easy 13-14 inches long, I know it doesn’t look like it, but it is super curly. And I know I do not look happy, but this picture was taken early this morning as I rushed to shower, get all the kids ready and help Sarah out the door to pick up another kids for pre-school.

This is Andre, he is our barber, the best one in the Big “O”. He owns Red Hot Barber Shop; and had a balloon with “Get well soon Xander” ready for him, along with a card, when we came in. He later told us he was in shock when he heard what was going on, and told us he would be praying for him. He spoiled X the entire time, offering him Ho-Ho’s, cupcakes, and candy.

Andre uses an acual “Old School” straight razor to line us up, X was cool with it, but did tell me he was a little nervous. I took a picture of his coolness, then asked him to show me his nervous look.

Andre finished him up, and X, like always just stared at himself with a grin on his face; he loves getting haircuts. We then took a quick “tough guy” photo. By the way Thanks J for hanging with us, and taking photos.

It was now my turn, and I was NERVOUS! I know it’s dumb, but over 2 1/2 years went into making this hair. There was a lot of talk at the shop about me actually doing this. I think they all would have talked me out of it, if I hadn’t told them why I was cutting it.

Andre made sure that X helped him cut my hair, X was ear to ear smiles as he helped. He giggled and said “I got my dads hair”, as he held up the first of 6 braids.

I could literally feel my head becoming lighter, the first picture shows me after all the braids had just been cut off. The second is just before my straight razor line-up.

The boys all cleaned up, looking fresh. Andre and X. Andre thanks a lot, you made it an even more special day.

Me and my baby boy are now ready for the Mayo Clinic. I am very proud of him because he always takes on challenges head on. I am donating my bag of hair to Wigs for Kids, I hope a kid out there will benefit from our adventure.

It is crunch time for us here, so keep up the praying. We have become very good at handling stress, that is the upside to all of this craziness in our lives. I hope you enjoyed our adventure, the next post will be about the party at pre-school.

Most of our family and friends already know a lot about this trip, because of our facebook page, emails and multi-texts. If you are new to this site, and want more info. feel free to contact us, and we are more than willing to share our experience with you. Since Xander’s surgery is less than 2 weeks away, you will have to excuse this post because for the most part I am going to stick to the facts.

Monday, Dec. 16th to Friday, Dec 20st we had our week of monitoring. X was given an EEG cap and was monitored 24 hours a day, this included audio and visual recordings as well. We were actually warned by the nurses several times not to do anything we didn’t want the world to see. I must have given the nurse a confusing look, because she explained that everything in the room was being monitored and they have had numerous teenage boys disregarding the warning. I laughed out loud at that, my innocent wife gasped.

The monitoring continued until Thurs., as well as blood draws, medicine changing (with doses), and vital checking. Wednesday came and X started getting really annoyed about things, rightfully so. He had been taken into different rooms for more testing, put under twice, and confined to a bed. Now I was confined to a hospital bed for two days due to a staph infection, and had to stay in the room for 3 days, I went nuts. A 5 year old, with about 168% more energy than me, only allowed to leave for more cruddy test, that was awful for all involved. We tried to keep him entertained by making everything into a game, but he soon became hip to what was going on.

It was during this time that I confronted a 3rd year resident about his medicine, and what was happening. Of all the doctors (and medical personnel in general) we had contact with; she was the only one who we had a problem with. She was smart, but her bedside was not at the level we had come to appreciate. Sarah and I do not think she will make it there as a doctor, she is not of the same mold as the doctors we had, even nurses talked about it. Anyway, after I confronted her, she avoided me like the plague. I ended up trying to talk out our differences; it didn’t feel like she got it.

Thursday was the best for X, he was allowed to take off his wrapping, and they removed his EEG electrodes. They do it with an acetone mix, so the smell is horrific, and since X has super sensitive skin, and they were rubbing so hard, he had a bunch of scabs a few hours later. Later on that night there was a Christmas party where X won a huge TAZ stuffed animal (He named it I.V.). Santa came too, called X up as the first to receive his gift; unfortunately X had a seizure and fell right on his head. We had to go back to the room and be checked over; X was bummed he didn’t get to talk to Santa. About an hour later X heard a knock and a “Ho, Ho, Ho”, Santa had made a special trip to talk to X and take a picture. All I could do was thank everyone for being so thoughtful, and take a picture; X was ear to ear smiles.

We were able to go home that next night after a long discussion with two neurologists. The ride home was fun, minus X starting to complain of abdominal pain. We would later talk about this and realize he was pooping a minimal amount, this would cost us two ER visits, and much frustration.

This post is not as detailed as it could be, and if you want more info. on the week of testing let me know. We just have a lot to do before we leave this next week, and I really am not in the mood to go into all the details today.

The first item on the agenda is my friend Erica (AKA: NOT the boss of me) is coming to visit this weekend. Great news for all of us since we get to see her sweet baby Ella, and in case you didn’t know, my boys LOVE baby girls. The twins are like old faithful dogs; they will retrieve toys of their own and literally place them at the feet of baby girls. Xander will coo at the baby, and direct the Twinkies on baby boundaries, all the while smothering the baby. I am going to admit that I am pretty excited to Ella too; I hear she has a knack for making animal noises, sticking fingers and metal objects in sockets, and attacking helpless dogs. I think she will fit in here just fine, I am glad to have Erica here too, as long as she doesn’t try to boss me.

The second item is haircuts; yup I said it, haircuts. I have not cut my hair in over 2 1/2 years, and on Friday the 29th of Jan. 2010 I am making the move. I think the last time scissors touched my hair was Aug. 2nd 2007; my hair is now down to my mid-back, and I love it. However, since X is going to have to shave his head for surgery I made him an offer. I told him if you cut your hair, I will shave all my hair off. His smile was ear to ear and he agreed. For the last year or so he has been talking about the need to cut my “Girl Hair”, and I always tell him “No way!”. He is totally excited to be in charge of that decision, and I am going to make sure our barber allows him to make the first few cuts.

I will make sure that I take pictures (Before and After) and I will post them on Fri or Sat. To be very honest I am a bit nervous about this, I know it’s only hair, but I may never get another chance to grow it out again. The fact that X is so excited about this, and I have an opportunity to show him that I am willing to help comfort him at all cost, wipes those nerves away. I have decided to donate my hair to wigs for kids ( http://www.wigsforkids.org/hair-loss-in-children/faq/ ) since they allow kids to receive free wigs instead of charging people like Locks of Love (My original choice). There were a few other free places as well, but mostly for cancer patients; I have no problem with cancer patients, I just figured that since my son has to deal with this I might as well donate to a child centered organization.

Stay tuned for the hair cutting post. Also just a side note, the time between posts may more like a day or two as the time to go to the Mayo draws near. We just have a lot of stuff to finish up before we go.

When someone asks me “Where do you live?” I reply Dundee. That is often followed by “Oh my gosh, how do you like living there?” I then explain that living there is a lot like living in Mayberry. Now some of you may have never watched the re-runs, or know what I am talking about but there once was a show called “The Andy Griffith Show” (There may even be some of you who watched it when it first came out). For those of you who have never seen this show, I will explain it to you. The show had Andy Griffith as Sheriff Andy, Don Knots as his side-kick deputy Barnie Fife, Aunt Bee, and his son Opie (Played by Ron Howard). The show was mostly based on The Sheriff solving the cities problems, or the city rallying behind a good cause and showing teamwork can prevail over anything.

That being said, it is Official, I LIVE IN MAYBERRY. Here’s the scoop; our block throws parties all the time, sometimes for good reasons, other times because it’s been snowing too long so lets party. So it was no big deal that there were two parties scheduled for January. The second party was scheduled for Sunday the 25th., and I was just getting over my Flu. Sarah left us all sleeping and went to help our neighbor/friend Andrea prepare for the party. I fall asleep as she is walking out the door only to wake up to her almost in tears explaining to me what is really happening. Here’s how our conversation went S: Oh my gosh Dan, do you know what’s going on? D:No S:They are not really having an open house party, they are having a fundraiser for us. They are having a block fundraiser for us! D: Really? That’s awesome (Still trying to wake up) Should I get up and go? S: Ahh No, but isn’t that incredible, I can’t believe it, that is totally what we need right now. D: Yeah, that is, I should go. S: No, your ok, go back to bed.

At that point I get X up, because he is not sleeping anyway, dress him and send him over. I sleep for about an hour more, sweat my flu out, and Sarah comes over again this time with a box of checks. I get up feeling 100 times better and get ready as I walk out my door and over to the party. I say my thanks, and am completely overwhelmed by the support.

Here’s what I have to say about my neighborhood. They didn’t have to do this, and yet they did. Andrea thought of the idea, gathered all the neighbors and the ball started rolling. Due to their love and support another street became involved as well. The block turned to two blocks which then began including families, and extended friends. All of this for our Xander, and by our I mean Dundee’s Xander. It brings an entire new meaning to the African Proverb “It takes a Village to raise a child”. I have never really seen that in a literal translation, but on Jan. 25th 2010 I was blessed enough to do so. It wasn’t so much the money donated that was heart wrenching but it was the genuine, unadulterated love that was in the air. I looked around the room as I gave my thanks and started to get choked up, I could see people were really concerned. Eyes don’t lie, these people, our neighbors and friends all showed they were concerned not only with their actions but also with their eyes.

Guys, they had a raffle, silent auction, food, drinks, beer, everything. They had good things up for auction too, like a Wii, and a year membership to a gym. The thing that gets me is how everyone came together, they acted more like Christ, then most Christians do. And I say that not with ill will or bitterness towards the church, but to wake the church up. These men and women are loving people the way every Christian in the world should be. I will step off my box, and continue with the fundraiser.

I think I will forever be a slave to my snow blower, and any other back breaking labor I can offer to all of those at that fundraiser. I can usually talk up a storm, but all I could say was thanks. I hope I didn’t have any residual flu illness on me and infected anyone, but I had to see for myself who was there. I hope no one took my silence as rudeness, but I was honestly in a state of shock. When I walked in and saw everyone there, I knew I couldn’t talk, if I would have I would have started crying. Besides that I have a reputation to uphold in this neighborhood, and crying would have only made me look weaker and Fred that much tougher. (Just kidding Fred, your tough).

To sum this all up, if your looking for an incredible historic neighborhood, with neighbors that actually care, move here. It may say Dundee on the for sale sign, but when you move in, it feels like Mayberry.

PS if anyone has any pictures from that party e-mail me them, and I will post them on this.

As of now we are still trying to figure out the details of our next trip. Who, if anyone can watch the twins (I am super picky on who watches them) until my parents can bring them up to us. If my parents can bring them up to us. We want to be able to totally focus on X, but we realize that we may have to take them up too. We are trying to get all of our bills in order so that none of them are late. Looking for someone to stop by the house daily to make sure it hasn’t been broken into, and makes it look like someone is home. Working things out with insurance, as well as work, and the days off I am going to need. Getting our taxes completed, and figuring out why I am getting these crazy letters from the State. And now most recently, getting over this flu bug we all have. All of this preparing and still waiting does not mix well with me. I am way too impatient.

Our life seems as if it were on fast forward, as of a week ago it was creeping by, now I am looking for the pause button. My sweet wife, who is always a rock we can lean on, is having a really hard time. I am praying for her that she works through this, but I can only imagine what it is like to be a mother.

If you were blessed, like me, to have an incredible Mother, the very word will invoke deep emotions. I associate a mother as someone who is always there, no matter what; someone that will make your pain go away with sweet kisses, or a bowl of ice cream. Someone who will “feel” it with you, and hold you, not saying a word but allow you to feel secure in her arms.

That being said I can only imagine how her heart aches. We talk all the time, and have better communication then we ever have had, but I cannot know how her heart feels. God is the only one who knows. Other mothers who have gone through a similar event can relate, as I am sure every mother “feels” differently, but only God can know. Please pray for Sarah this week that she works through this tough time.

The last thing for tonight was brought to my attention from a good long time friend. He stated that he had realized that he was keeping updated on this site, but had failed to contact us. He shed some light on something that Sarah and I have been talking about, the feeling of loneliness. We get e-mails like crazy, but recently our phones have quieted, and our visitors have all but become extinct. My friend said this may be due in part to the same reason as him, keeping up, and forgetting to call. He knew what was going on and was praying for us, but calling simply slipped his mind. If that is the case with anyone else, feel free to call.

Let me make this very clear, at first we needed our space, now we need our family and friends. This is not a small operation, or even a small event. Now we, having faith in Christ, believe that it will all work out well, but it is very comforting knowing that there is a familiar voice on the other end telling you the same thing. Or as my friend put it, not even talking about Xander and just talking about other things. I am going to tell you we need it, and welcome it. We may not always be able to talk, but I am sure there will be a return call, or another day you can stop by.

We love you all and still feel the prayers of all of you. I will tell you again we can feel when we are being prayed for, and when we are not. I truly believe that you all have created a prayer covering over us that are powerful, healing, and peaceful and helping us keep our sanity. Thank-you ———–The TORRES Family

Xander and his buddy Lil Johnny

Zane, Grandpa, Sarah, Grandma, Nana Judy, Grandpa George and Israel

Seriously I never knew that staying at a clowns house would be so awesome. We totally love it. Everything about the place is great, and everyone here, staff and residents are all so nice. We were told that some families have stayed here for more than a year. They have these journals in your room that you can write your story in to share with the next resident, I read some and they really open your eyes to life. There is a boy around 12 years of age who had his leg amputated just before Christmas due to Cancer. When we came here last I remembered seeing him. I wanted to hug him, and say something inspiring to him (What I have no idea, I just wanted to), but I was afraid if I did that I may end up being kicked out and eating cinnemon rolls for breakfast asking the guards for another orange juice.

I’ll give you a quick tour before I call it a night.

This is our room, we have a queen size, sleep by numbers bed (We were told not to be excited about it since it’s the cheapest one possible) and a trundle bed. We have our own bathroom, closet, dresser, TV, DVD player, and cleaning supplies.

This is our Kitchen, we share it with everyone on the second floor. There are 6 huge Fridges, and numerous kitchen appliances. At one point I walked in as 5 different families were cooking, and there was still plenty of room. There are at least three of these kitchens, that I am aware of. The nice thing about this is you can buy your own food, cook and eat it. All they ask is to clean up after yourself. I noticed that the Amish staying here clean extra, I have caught them numerous times cleaning different areas. I am not sure if they just like really clean places, think everyone else is filthy, or feel compelled to help more and show it by cleaning. There is also open food for anyone to eat, and a huge Ice Cream bin.

This is one of the 6 play areas that I have found. This is actually a game room, and it is so much fun. I actually sat and played pinball with X for about 20 minutes non-stop. We then jumped on an arcade game, then the playstation 2. There are 3 playstations and a Wii just in this room. Not to mention all the craft stuff you can do, Sarah and the twins made a snowman, and a penguin.

Even the ceiling are cool, the twins kept looking up and finding things like this

Dinner was fun since we all were able to pick our own desserts, and they were free! Dippin Dots for FREE!!!

Whenever we visit a new city I am going to try to stay at a RMH just for the free Dippin Dots. This is all of us enjoying dessert, Israel chose to go with a Icee instead.

I had to get a decent post like this in because Sarah was telling me that our site was boring and I needed more pictures. I am sure if she reads this, and looks at the photos she’ll tell me to erase it, lets see how long that takes.

Life after Mayo the 2nd time to Mayo the 3rd time was interesting to say the least. At the time we had Xander in soccer and baseball, he actually did well in both but a bit better in baseball. He was going to pre-school 5 days a week, and totally soaking it up. The seizures had not changed, but we thought that in no time soon would we have this figured out.

Well then the seizures started becoming stronger, more frequent, and occurring at odd times. Xander still had is “Aura” that would let him know before he had one, and usually give him enough time to advise one of us, but the time was a bit shorter. He wasn’t recovering as fast from the seizures, and his right hand started to spiral downward fast.

For example, he would usually not have them during the day, and now it was becoming more commonplace to see that happen. The poor boy even had one during one of his soccer games. He was in the pre-game running around with everyone, when all of the sudden he sprinted to us, from about 30 ft. away, and had a pretty bad seizure. Sarah managed to break his fall, as he didn’t reach us; it lasted about 30 seconds and it was heartbreaking. Everyone was staring, and I don’t blame them, I would have too and I have a wife who stares all the time, but it’s hard to take when it’s your kid. Being the trooper he is, he shook it off, and went back to playing. Parents came up to us concerned, and I am sure there was one or two just being nosy, but oh well.

It was during Sep.-Dec. that he started falling and hitting his head a lot more. That really didn’t get any worse until we called about how bad his seizures were getting, and they put him on Depakote. Once again we had to deal with his mood swings, and his attempts to adjust to the affects the medication had on his little body. It was hard for us, and I know it must have been even harder for our X, after all it was he who had to actually go through it. Depakote had the same results as all the other drugs, it worked well for about a week, and then it was back to craziness. The worst part about Depakote was the fact that it stole his “Aura”. The next thing we knew he was falling all the time and cracking his melon, leaving hematomas the size of tangelos.

Now Xander knew about Hematomas, and would talk about them, but now our twins, who could better understand things were talking about hematomas. You know your son is falling and hitting his head way too much when 2 1/2 year olds are saying “My Tomie hurts” everytime they bump their heads. It was because of this, and the fact that Xanders head was starting to look like a golf course, that we finally got him a seizure helmet. It’s not really a certified seizure helmet, Sarah made it much more fun for him by getting him a Boxing (sparring) helmet. He loves it, and has even worn it to preschool.

We had X on very high levels of Depakote, tegratol, and carbomezipine, all at the same time, and none with any visible results. He was falling all the time, very emotional, and just not himself. He looked like he was high all the time, we were not the only one to notice this as friends family and pre-school teachers all mentioned this. We could no longer stand it and called the Mayo again. After playing phone tag for the better part of a week we finally made contact. We were told that they would look over all of his files again, and give us another call.

The next phone conversation we had was intense, and yet had Gods hand all over it. Dec. 9th 2009, I was working and so happened to stop by the house to pick something up I had forgotten. I used the restroom, and the phone rang, Sarah answered and I could tell be the tone in her voice that it was serious. I finished and walked up to her, she put it on speaker and I could hear Dr. Patterson explaining that there was concern over his condition worsening. He also explained all the possible different things he could have, to his credit his tone was perfect and somewhat comforting, even though his news was not. He then told us that we could guess all day long but it was time that X was monitored for a period of time. He explained how serious the diagnosis could be and the possibility of Rasmussen syndrome. He then explained what Rasmussen syndrome was. We agreed to the monitoring and he advised that he would call and schedule the appointment, he also stated that due to the seriousness of his condition X would now be seen by different doctors.

Here is a good link to what Rasmussen syndrome is– http://www.epilepsy.com/epilepsy/epilepsy_rasmussens

We hung up, and Sarah cried while I forced tears back. I still had to go back to work and let them know I was going to need the rest of the day off, I couldn’t go in there all swollen eyed, and stuffy. I let my co-workers know I was taking the rest of the day off, got in my truck and cried like a baby. I begged and pleaded with God not to let this happen to my baby. In the middle of all of this I felt as if God said “Call Edwin (My cousin)” I was like WHAT? I did, and that was what I needed. He prayed with me, and I felt the peace of God on me as I walked into my house.

The next day Mayo called and we would have our appoint for that next Mon, the 16th. The next few days were tough on us as we tried to process the different things X might be diagnosed with. We also had to pack and make plans to go. Lucky for us, my parents and sister live close by and offered to watch our boys, along with other friends like Mindi and Donnie who stopped by to check on them. We were able to go up to the Mayo without the twins, making it easier for us to totally focus on X, and all the information that would be thrown at us.

I will have only one more historical post, and that one will entail the week of monitoring. I will finish this last trips appointments as well, then I will finally be caught up. If you have a child with Epilepsy and would like to contact us feel free to do so. There is so much more detail we could go into, but i am just trying to cover the basics and cover the history, as many know as far as detail, I could talk/type for hours, but it would get boring for other readers.

If this post doesn’t make sense it’s because I worked 12 hours yesterday and I am going on 4 hours of sleep.

The day after the cognitive test were completed, we met with X’s Neuro-Surgeon Dr. Wetjen. Here’s the crazy/funny part. We were told by the Neuro-psychologist that X and Dr. Wetjen looked very much like they could be brothers, we were like, sure they do. After waiting in the room for about 5 minutes the Dr. came in and we were in a state of shock, they look like they could be father and son. They look so much alike that Sarah couldn’t help herself and even told him what we had heard. He laughed it off and began the appointment; I couldn’t help but continue to stare at the both of them, it was so uncanny.

The Dr. explained so much about what was going to happen, and the precautions that would be taken. He said the main thing was we were making the right decision, those words meant a lot to us. A lot of the information that he gave us is in the post prior to this, but I will give you a bit more.

He said that the grid was going to cover the left side of his brain. He stated that this was going to be about a 4 hour operation, and that the part of the skull that was cut through was not going to be reattached until after the 2nd operation. Once the grid is in place it would immediately begin to record seizures. One of many interesting facts he told us was sometimes after the brain is exposed it does not have seizure, the reason is still unknown. Some kids have gone as long as weeks without having a seizure.

Once the grid is in place and they have located the spot causing the seizures they would send signals to the electrodes to see if that part of the brain is responsible for a major function (ex. arm, leg, hand movement, speech, sight, ECT.) This way X does not lose one ability for another, it’s a bit overwhelming. The Dr. was very kind, and sympathetic during this time, he advised us that X would lead a better life with this surgery, than if we ignored it. He said that we were choosing the lesser of the two evils in surgery, and that his inability to use his right hand/arm was not going to be worsened by the surgery since his brain was already abnormal in that area. He told us all about how resilient children are, and how X would learn to adapt to all of this. It all sounds good, but honestly it doesn’t feel good.

A quick side note, a few months ago I told Sarah that I was never going to choose brain surgery because it was not a choice I wanted to make. I didn’t want my son being upset that I was responsible for his pain and suffering due to the choice I made. I didn’t want him to go to school and listen to the mean kids that may make fun of him, tease, or make him feel insecure. I didn’t want girls to not think he was cute as he grew older. I told her that no matter what I would wait until he was old enough to make that decision for himself because it was not my brain. I now eat my words, I am forced to make this decision for him; I am fervently praying that I am making the right decision for my son.

So after he tells us all of this, and gives us the percentages (listed in the previous post) Sarah gets up and leaves. Now I knew she was feeling sick to her stomach all morning, but that was the extent of it to this point. I continue to talk to the Dr. and he said that he wanted to do surgery as soon as possible, then after looking at his appointment books, he said I have Feb. 3rd available. I said OK. He told me that the 2nd surgery would go off a few days later as long as everything went accordingly. I had a few more questions, and he answered them all. One question was how common is it to misplace the grid, having to reapply it later; we have heard of this happening a few times and were concerned with it since it could lead to more complications. He then very confidently explained that he does this type of surgery a lot, and that the Mayo does this surgery a lot. It was not an uncommon surgery for him to perform, and “I will not have to realign the electrodes, I will get them right the first time”. His confidence was reassuring, and I knew that he was not just saying this, but knew it. Our conversation wrapped up and X and I waited in the waiting room for Sarah.

We waited, waited, waited and waited, finally she came out but it was not good. She was caring a plastic bag with her jacket in it, and had this poor puppy dog look on her face. She explained that she had been running to the bathroom, only to throw up in her mouth feet from the bathroom door. The vomit continued and erupted from her mouth all over the floor. She courageously attempted to clean it before anyone noticed, but was unable to. Our Dr.’s nurse saw her and helped her out, calling maintenance saying “Someone vomited on the floor”. She was so embarrassed, and we left quickly.

We met with X’s neurologist a few hours later, and it was more stats, and a repeat explanation of what was going to happen. It was at this point that she asked us if we had let X know what was going to happen; we told her “How do you tell a 5 year old that he is going to have brain surgery?” That is a question we had asked every doctor, every doctor said to be honest, but not to mention cutting into his brain. We still were asking for help, and our Neurologist of all people helped us.

She had X sit on Sarah’s lap and explained to him about the meds. not working and that everyone wants to help him get better. She explained to him that he was going to have an operation, and how he was going to feel. This lasted about 10 minutes, he even asked a few questions; his main concern, besides getting “Pokey Shots”, was “Is this going to hurt?” That question struck a deep, deep cord in my heart, the fact that my baby X had to ask that hurt.

For about 7 years I have been studying body language, and am able to read it. I have to do it for my job and in life just by habit, and I can tell things by reading body language that most people don’t pick up. While we were in that room I was doing just that. I watched as my son started breathing heavier, took long swallows, and avoided eye contact at times. I noticed he looked up when talking about the possibilities of pain, in essence disassociating himself from it. I watched him swallow hard and roll his eyes at the mention of having a headache upon waking up. I could also just sense he was not happy about the whole thing, I started getting teary eyed again (I know big shocker huh), took a few deep breaths and kissed him on his neck, whispering that I loved him.

We left the appointment a bit overwhelmed, we left the Mayo overwhelmed. When this whole surgery thing came to a head we were under the impression that we would have a month or more to prepare. We talked about wanting it sooner than later, but just thought it would be later. Now we only have 15 days to get everything in order before we have one of the biggest weeks of our lives, so far. We are on the verge of one of the biggest decisions that we have ever had to make, and have less than a month to get our house in order. If you are reading this and it is not the 3rd of Feb. 2010, please, please pray that the stress would be minimal, that we would have clear heads, and that we would be able to get our home in order prior to the surgery. We do not want to neglect our twins, and understand that we have to go through this as a family. Just because they are little, does not mean they are clueless, they know something is up. They miss their Xander when he’s gone, and vice versa. Please pray. I will keep you all updated, and thanks for your prayer, God is listening.

So after talking to the surgeon we need a few things to fall into place in order for these to be successful surgeries. I will list them in order.

1) They are going to place the Grid on his entire left side of his brain, during this they will be trying to locate exactly where the seizures are originating. The problem lies in the fact that sometimes kids stop having seizures for a period of time due to the brain being exposed. They have no answers as to why, but they said they have waited as long as a few weeks, before seizures began. That being said we WANT him to have seizures during this time so they can locate them.

2) One they locate the area it needs to show one localized area instead of numerous, one is better than a ton. One they can operate, a ton usually means they can’t, so X will have a huge scar for no reason.

3) After the seizure is located they are going to test that area to make sure it will not have any permanent damage (ex. inability to use arm, leg, eye, speech). So that is another thing to pray for. No one wants X to lose one thing only to gain another.

4) After that we are left with the final surgery, and we just ask that you would pray that the Lord would guide the surgeons (Dr. Wetjen) hands, and for a fast/amazing recovery.

The stats are 86% are affected in some way by the surgery. 14% are not affected one bit. Out of that 86%, about 65% never suffer from another seizure, and the other 35% have fewer seizures. There is a less than 5% risk in this first surgery, and the main concerns afterward will be bleeding, and clots. The blood clots can cause subdermal hematomas, and strokes. Very serious things, but we are confident that God has already paved the way.

I know some are still asking about the weakness in his right hand. They are not sure if it will ever recover, I am depending on my faith that it will. If you want more on that let me know, I can write another note/post.