So we are officially back for another round of tests. We were asked to come back since they advised us that if his seizures continue he will have permanent brain damage, not exactly what we wanted to hear. This whole time we thought he was doing great, going from 12-20 plus a day to 1-3 a month from March to August, and 3-7 from August until today. We were wrong and now we are back.
We have three options as it stands, the first (not in any order) is another surgery. Honestly that is not a very reassuring option as I am sure we will be told again, that another surgery is not in favor of us (statistically speaking) as the first one. Not to mention I am almost positive that we are going to be told that the section of brain that they need to remove is going to be his motor strip. Yeah, his motor strip, meaning possible paralysis on his right side and it is also possible that no amount of therapy will fix that. Not exactly a choice a parent wants to make, especially since there is now more a chance at failure then the first time.
Another option for us is the Ketogenic Diet, there is really to much on this to explain here so I'll break it down very simply for you. It sort of starves the brain, bringing it into a ketosis state. Stats are not on our side on this one, but they were with the first surgeries and look at us now. I think we are both in favor of this choice, seriously how many surgeries will it take, and how much brain will they have to take out before they either give up or he is not the same boy we love. This choice means a very strict diet, but those who have followed it have been "cured". Not all of them, actually a small percentage, but we seem to fall into small percentages all the time, so why not give it a try. The worse that could happen would be that it doesn't work, I lose weight (since I would do it with him) and we have to reevaluate our options again.
Another option is the Vagues Nerve Stimulator, VNS for short. This is another options that is going to take forever to explain but simply put, it is an operation where they implant him with a machine (for lack of a better word) that will send an electrical pulse every time he is about to have a seizure to scramble the one his brain is sending. Kind of like short circuiting his seizure; although this is not proven, and there is much debate about this option.
Another option is to do nothing, sounds a bit like giving up, and irresponsible, but I guess it depends on how you look at it. This is another option that will cause much debate, like we are depending too much on God for a miracle and not looking at medicine (Which he created) to find a solution. And other would debate the opposite angle, that by not doing anything we are depending on an Almighty God, who has cured sick, caused the blind to see, lame to walk, raised the dead, and given us all hope.
I am not here to be the center of debate, whatever choice we make we ultimately are responsible for it, that alone is enough weight to bear. Those who have walked similar paths to this understand what I am saying and those who have never walked these confusing paths can only guess what it is like, never really understanding. That last sentence was not meant to hurt, it is the truth though, I can say that since I am going through it. After going through all of this I am fairly sure that I will not try to question any decision that is made when it come to health issues. I will never understand what it is like to have a child dying of cancer, so when I meet one, I listen, and am very careful with my words, and support them in any way that is possible, if only with prayers then so be it.
We have had the privilege of meeting incredible parents and children alike who are suffering through things that no one should ever have to, you learn that every situation is different, special, and incredible in their own sense. There is the girl in the wheel chair who is fighting cancer, one leg and lost hair. If you looked at her and judged her by her appearance you would say she was sad, and unfortunate, the moment she speaks you hear life and can sense a spark. I'm 31 years old and am intimidated by her presence, not because of the way she looks, but because of her attitude about life. Being around the "sick" puts things back into perspective, I think I just need to visit here every 6 months to remind myself.
Sorry about that tangent, I just started to roll and realized I am off course. Options, so many options and so much to think about. We only ask that you would pray for us as we choose our path.
Xander is doing well, besides a bug he caught last night, he is so positive about things and strong beyond his years. I am so proud of him, and when he is older, he will be on heck of a man, in every sense of the word. Those who are around him will be blessed, and whoever he marries will have a kind a considerate husband. He is always thinking of others, even now; when everyone received a brownie, except me, he offered half of his without blinking. Hugs and kisses come at the most unlikely of times and sweet smiles pour off his face like a sudden storm. He is contagious to be around, nurses are amazed at his sweet nature, and Doctors have mentioned his bravery and ability to do things that children 2 or 3 times his age are unable to handle.
We are in the middle of a storm, 9 more inches to add to the 18 on the ground, so I have to get off. The twins are terrorizing the playroom and I am sure it is going to take 30 minutes to pick this place up. I'll post more as time allows.
Monday, December 20, 2010
Sunday, September 12, 2010
Gotta love them festivals
I cannot wait until all of these stupid festivals are over, Since the middle of August it has been nothing but babysitting at these things. Normally I wouldn't complain, but lately I have been more easily annoyed at these things. Kids who think they can say whatever they want or don't have to listen to what we say, a whole bunch of "Entitlement" kids and parents who enable. Here's a good example
We caught a kid (21yrs., not really a kid, but ya get what I'm saying), pounding some beers right in front of us. Clearly intoxicated, and somehow unaware or unconcerned with the fact that he had an open container, he took a long drink as he stared at me. I walked over, took the beer away, explained to him that open containers or drinking in the street (Not the beer garden) was illegal. I even kindly asked him to refrain from drinking outside the beer tent, and explained that while I had the ability to kick him out, I was going to allow him to enjoy the festivities. He stumbled off, walking in an entertaining zig zag pattern away from the beer tent. No more than 10 minutes later he is in line to the beer tent, 6 pack in one hand, his other hand on his open bottle as he drank away (again maybe 15 feet from us). Now, I was annoyed, feeling as if my kindness was taken for weakness, I snatched his beer away and kicked him out (giving him another break since I still didn't cite him for open container), he laughed it off and made some reference to not wanting any problems.
A quick tangent, that is one of those ridiculous comments that if you really think about, make no sense. Take this kids statement that he doesn't want any problem, yet he says that after being told what he was doing was illegal, then repeating those very actions less than 10 minutes and 15 feet later. In my opinion, if you really don't want any problems than you go repeating the same thing that would have given you problems in the first place.
Back to the situation at hand; this kid was seen about 2 hours later waiting in line to get back in the beer garden, new clothes, same guy. I immediately recognized him and told him he had to leave, after a few rounds of "I've never met you nor have I been kicked out" and "Yes you have you changed your clothes, get out" he has a line that typifies entitlement. My grandfather is the lieutenant governor of Nebraska, to which I quickly replied, "Yeah that's nice, my grandfather's a preacher, now leave". Defeated, confused and drunk he left.
Parents who bring their kids (Less than a few months old, to festivals so they can have a good time, ignoring the fact that it is 9pm and their tiny baby should be at home sleeping. Some even bring babies out as late as 1am, to hang out at bars, or areas of recent fights/shootings. It's appalling, and very sad, children raising children. Parents that refuse to believe that their children are capable of the crime they are being charged with despite the fact that we showed them video evidence of their child committing the crime. I also find it interesting when parents Make statements that their child would not have done this crime had it not been for their friends. Or instead of having their child confess they ask us to leave and want an attorney; I know it's their constitutional right, but my parents, and most good parents would demand the child to fess up.
That has been my most frequent and typical contact with kids/young adults, so festivals are annoying. I should post how many dumb comments people feel compelled to make to police officers, or how when we don't want to talk we keep it short or walk away and people still feel the need to continue on. I could go on and on, but I have one last festival day to get to in about 2 hours.
We caught a kid (21yrs., not really a kid, but ya get what I'm saying), pounding some beers right in front of us. Clearly intoxicated, and somehow unaware or unconcerned with the fact that he had an open container, he took a long drink as he stared at me. I walked over, took the beer away, explained to him that open containers or drinking in the street (Not the beer garden) was illegal. I even kindly asked him to refrain from drinking outside the beer tent, and explained that while I had the ability to kick him out, I was going to allow him to enjoy the festivities. He stumbled off, walking in an entertaining zig zag pattern away from the beer tent. No more than 10 minutes later he is in line to the beer tent, 6 pack in one hand, his other hand on his open bottle as he drank away (again maybe 15 feet from us). Now, I was annoyed, feeling as if my kindness was taken for weakness, I snatched his beer away and kicked him out (giving him another break since I still didn't cite him for open container), he laughed it off and made some reference to not wanting any problems.
A quick tangent, that is one of those ridiculous comments that if you really think about, make no sense. Take this kids statement that he doesn't want any problem, yet he says that after being told what he was doing was illegal, then repeating those very actions less than 10 minutes and 15 feet later. In my opinion, if you really don't want any problems than you go repeating the same thing that would have given you problems in the first place.
Back to the situation at hand; this kid was seen about 2 hours later waiting in line to get back in the beer garden, new clothes, same guy. I immediately recognized him and told him he had to leave, after a few rounds of "I've never met you nor have I been kicked out" and "Yes you have you changed your clothes, get out" he has a line that typifies entitlement. My grandfather is the lieutenant governor of Nebraska, to which I quickly replied, "Yeah that's nice, my grandfather's a preacher, now leave". Defeated, confused and drunk he left.
Parents who bring their kids (Less than a few months old, to festivals so they can have a good time, ignoring the fact that it is 9pm and their tiny baby should be at home sleeping. Some even bring babies out as late as 1am, to hang out at bars, or areas of recent fights/shootings. It's appalling, and very sad, children raising children. Parents that refuse to believe that their children are capable of the crime they are being charged with despite the fact that we showed them video evidence of their child committing the crime. I also find it interesting when parents Make statements that their child would not have done this crime had it not been for their friends. Or instead of having their child confess they ask us to leave and want an attorney; I know it's their constitutional right, but my parents, and most good parents would demand the child to fess up.
That has been my most frequent and typical contact with kids/young adults, so festivals are annoying. I should post how many dumb comments people feel compelled to make to police officers, or how when we don't want to talk we keep it short or walk away and people still feel the need to continue on. I could go on and on, but I have one last festival day to get to in about 2 hours.
Tuesday, September 7, 2010
A new Husker Fan
I hate being sick, It's just a head cold, but it sucks. Add to that my allergies that are bad enough I am suppose to be on shots for (Which I quit taking after a month) and you get a miserable me. Besides being sick and having allergies thing have been going well. The twins start pre-school in two days and X is still loving school.
No more news in regards to X, he has been doing well. He went to his first Husker game with Sarah on Saturday and the both of them are now fans. On Sunday all he could talk about was the Huskers, I thought to myself, "Great, another blind fan", I'm not gonna ruin it for him, he can like who he wants. Sarah's conversion was a bit of a surprise, I didn't think she would fall for the Huskers, but I guess the sea of red was too much for her not to accept.
Israel and Zane are talking so much now, it's still a bit comical and surprising to hear them communicate so well. I guess with X gone they feel free to express themselves, the sentences they put together are pretty impressive. The house is so much more calm without X teasing them during the day. Fights between the twins are rare, and that is a good thing for my sanity.
Below are some pictures from the Husker game
No more news in regards to X, he has been doing well. He went to his first Husker game with Sarah on Saturday and the both of them are now fans. On Sunday all he could talk about was the Huskers, I thought to myself, "Great, another blind fan", I'm not gonna ruin it for him, he can like who he wants. Sarah's conversion was a bit of a surprise, I didn't think she would fall for the Huskers, but I guess the sea of red was too much for her not to accept.
Israel and Zane are talking so much now, it's still a bit comical and surprising to hear them communicate so well. I guess with X gone they feel free to express themselves, the sentences they put together are pretty impressive. The house is so much more calm without X teasing them during the day. Fights between the twins are rare, and that is a good thing for my sanity.
Below are some pictures from the Husker game
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Friday, September 3, 2010
You gots some esplainin ta do
So let me explain what caused Xander few seizures. On the Saturday after X's first week of school, Sarah gave X his meds. which caused him to question her on the dosage. We were then informed by our 5 year old son that the school nurse had only been giving him half of his afternoon meds. for the past week. At first we were unsure if this could be true, but Xander knows we do not joke about his meds, and he was adamantly defending his statement.
At first we were upset, then glad that he had not suffered from the lack of medicine. Oh wait, yes he was, we had jumped the gun. Totally forgetting that it takes 5 days for his medicine to cycle through, Monday thru Thursday were not fun. On top of his seizures we have to deal with a boy who was forced to take emergency meds, due to his 15 minutes or longer of twitches, but we had raised his dosage again and that always messes with his routine.
That week sucked, I was pissed that the nurse screwed up, even though she had the script, and Sarah had spoken to her. I was pissed X was having seizures, and was an emotional mess due to his meds, and he was upset that he was having seizures. The guy doing my roof was not calling back, and I had this leak in my basement no one knows where it's coming from. Plus my tractor broke down and my best friend Buddy was ran over by a car. Okay the last line's not true, but I felt like my complaining started to feel like a country song.
So that week has come and gone and this last week has been relatively quiet. Emergency meds only twice that I know of, and the seizure episodes seem to be behind us. Although as I finished typing that last sentence I couldn't help but wonder if I was only jinxing us.
I have this great video of Xander running away from home on my phone that I will try to download sometime next week. He honestly tried to run away, I had to go get him, but in his frustration he told me he wanted a new Daddy. He said "I wanna new Daddy, with long, curly, black hair and not mean like you!" I wanted to laugh, but I remember thinking that my sweet boy is frustrated. I think I know why, although I have yet been able to get it out of him. But my questions have led me to this conclusion. Xander misses his daddy, I only get to see him about an hour a day, if that. School has been draining, and his increase in meds always mess with his emotions until his little body can adjust. I felt bad, we had a short talk in the kitchen before he started to fall asleep (mind you it was only 12 in the afternoon), and I reassured him that I loved him and that one day things were going to change.
Well a few days later, I received a phone call that would bring about that change. I was asked to go B-Shift (Days) and that will start the second week of October. When I told Xander the news, he was grinning like the Cheshire cat, and sheepishly replied "Really!?!" Good new for us, sad news for my newest friendship. As it stands, I work with a partner who I get along really well with. We joke that we are brothers and our families get along well, my Twinkies have a crush on his youngest daughter. It's gonna suck not working with him since we work well together. Hopefully he gets days soon so he can spend more time with his kids too.
This weekend bring with it a big babysitting job called Septemberfest. To the average person it's just another Carnival; to me it means punks looking for fights or even worse looking to shoot someone, like they did 2 or 3 years ago.
There probably won't be any new post over the weekend since I will be busy. Sarah and X are going to the Husker game this Saturday, neither one of them has ever been to one, so that should be interesting. When they get back I'm sure there will be plenty of photos, prepare to throw up from so much red. I am not a Husker fan, so I could care less, but Xander has already been brainwashed by his 4 and 5 year old friends.
At first we were upset, then glad that he had not suffered from the lack of medicine. Oh wait, yes he was, we had jumped the gun. Totally forgetting that it takes 5 days for his medicine to cycle through, Monday thru Thursday were not fun. On top of his seizures we have to deal with a boy who was forced to take emergency meds, due to his 15 minutes or longer of twitches, but we had raised his dosage again and that always messes with his routine.
That week sucked, I was pissed that the nurse screwed up, even though she had the script, and Sarah had spoken to her. I was pissed X was having seizures, and was an emotional mess due to his meds, and he was upset that he was having seizures. The guy doing my roof was not calling back, and I had this leak in my basement no one knows where it's coming from. Plus my tractor broke down and my best friend Buddy was ran over by a car. Okay the last line's not true, but I felt like my complaining started to feel like a country song.
So that week has come and gone and this last week has been relatively quiet. Emergency meds only twice that I know of, and the seizure episodes seem to be behind us. Although as I finished typing that last sentence I couldn't help but wonder if I was only jinxing us.
I have this great video of Xander running away from home on my phone that I will try to download sometime next week. He honestly tried to run away, I had to go get him, but in his frustration he told me he wanted a new Daddy. He said "I wanna new Daddy, with long, curly, black hair and not mean like you!" I wanted to laugh, but I remember thinking that my sweet boy is frustrated. I think I know why, although I have yet been able to get it out of him. But my questions have led me to this conclusion. Xander misses his daddy, I only get to see him about an hour a day, if that. School has been draining, and his increase in meds always mess with his emotions until his little body can adjust. I felt bad, we had a short talk in the kitchen before he started to fall asleep (mind you it was only 12 in the afternoon), and I reassured him that I loved him and that one day things were going to change.
Well a few days later, I received a phone call that would bring about that change. I was asked to go B-Shift (Days) and that will start the second week of October. When I told Xander the news, he was grinning like the Cheshire cat, and sheepishly replied "Really!?!" Good new for us, sad news for my newest friendship. As it stands, I work with a partner who I get along really well with. We joke that we are brothers and our families get along well, my Twinkies have a crush on his youngest daughter. It's gonna suck not working with him since we work well together. Hopefully he gets days soon so he can spend more time with his kids too.
This weekend bring with it a big babysitting job called Septemberfest. To the average person it's just another Carnival; to me it means punks looking for fights or even worse looking to shoot someone, like they did 2 or 3 years ago.
There probably won't be any new post over the weekend since I will be busy. Sarah and X are going to the Husker game this Saturday, neither one of them has ever been to one, so that should be interesting. When they get back I'm sure there will be plenty of photos, prepare to throw up from so much red. I am not a Husker fan, so I could care less, but Xander has already been brainwashed by his 4 and 5 year old friends.
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| Zane with Grandpa George after swimming lessons |
Friday, August 27, 2010
I was right
So, as mentioned in my previous post, I announce he is doing well and he has a seizure. Well, I was right, last night he had 2 seizures and this moring one more before school. Maybe that means I should just keep it all to myself.
Thursday, August 26, 2010
Update and picture update
We have almost 2 weeks of school under our belt and so far so good. It seems as if X really likes it, from our conversations with him it all seems positive. Bedtime is still an issue for us since all three are still in one room, I was not as big of a fan as Sarah was about this whole thing, so we will see how long this last. It seems like when X is sleepy the Twinkies are not and vise versa, sooner then later we will have to start remodeling the basement.
Time seems to be ever eluding us, if it's not a busy week at work with overtime (aka Festivals), I am helping out with a fundraiser or Sarah has plans that were made in advance that we are tied to. Speaking of Sarah, she is going to compete in a mini triathlon this Saturday. It's scaled down, but nonetheless still a triathlon, I think she should do well considering she has been working out pretty consistently since June.
Xander has not had any episodes as of late, a blessing that I am a bit nervous to announce. It seems as if every time I start to explain to people how well he is doing, we take a step back and he has a seizure. Thanks to X being so sharp we found out his school nurse was only giving him half the amount of medicine that he needed in the afternoon. Sarah was able to call and correct that, an easy mistake for her to make, as I am sure she has a numerous amount of students to tend to. We are blessed to have this public school only a few blocks away, they really are one of the best. I am still torn at wanting to place our kids in a private school, but with the economy the way it is, and Sarah not working (Our choice) it is not feasible.
Here are some more recent pictures of the boys that I said I was going to post. More are sure to come, but as always time keeps on slipping into the future.
Time seems to be ever eluding us, if it's not a busy week at work with overtime (aka Festivals), I am helping out with a fundraiser or Sarah has plans that were made in advance that we are tied to. Speaking of Sarah, she is going to compete in a mini triathlon this Saturday. It's scaled down, but nonetheless still a triathlon, I think she should do well considering she has been working out pretty consistently since June.
Xander has not had any episodes as of late, a blessing that I am a bit nervous to announce. It seems as if every time I start to explain to people how well he is doing, we take a step back and he has a seizure. Thanks to X being so sharp we found out his school nurse was only giving him half the amount of medicine that he needed in the afternoon. Sarah was able to call and correct that, an easy mistake for her to make, as I am sure she has a numerous amount of students to tend to. We are blessed to have this public school only a few blocks away, they really are one of the best. I am still torn at wanting to place our kids in a private school, but with the economy the way it is, and Sarah not working (Our choice) it is not feasible.
Here are some more recent pictures of the boys that I said I was going to post. More are sure to come, but as always time keeps on slipping into the future.
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| Sarah drew a heart on his hand so he could squeeze it if he missed us |
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| First day of School and this picture says it all |
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It was a family event, the twins asked for him all day  |
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| We showed up an 75 minutes early so the twins played on the playground |
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| This is when he first see we are waiting for him |
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Mommy gets the first kisses |
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| But I walk away with the prize |
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| Sarah's birthday landed on his first day of school, we went to eat after we picked him up. He is so handsome and you can't see his scar unless you look for it. |
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This was her cake the Twinkies picked for her since it looked like a rainbow. She turned 21.......again. |
Monday, August 23, 2010
Keep on Keeping on
As of late, we have been receiving an increase of tele-marking calls; today I turned my frustration into laughter. I am not a professional crank caller nor have I ever done stand up comedy, I do think I am a little funny, and today I practiced. Tele-Marketers beware, calling my house is more fun for me, although I do think that you enjoy it as well. It is posted on my facebook site and hopefully I can have it play on this site as soon as I figure it out.
X starts his 2nd week of school tomorrow, it should be interesting since we had a meltdown on Thursday. The day started out with complaining, the walk to school was filled with much more complaining, and when we finally arrived to school he tried to run away. I had to walk him into school and when I left he proceeded to yell loud enough that I could hear him outside. About 40 minutes later we received a call from the school saying he was still crying, I had to calm him down via phone. The rest of the day was okay, we were reassured from the teachers that a lot of kids break down on Thursday and Friday since the thrill of school is gone and they are mentally worn.
The twins are doing great, crazy as ever and seem to enjoy the 7 hours a day they get alone with us. Earlier this week Sarah watched a program about the Rangers called "Making the Cut", they watched it with her with ever growing interest. Once it was over they were helping boost each other over the couch and telling each other "You can do it!", we definitely have our hands full.
The reason I have not posted in a few days is because I worked OT all weekend, on my days off we worked as well and since it was in the sun all day (94 degrees with what felt like 100% humidity) it drained me. Hopefully within a year I will be working days somewhere. Not seeing the boys all weekend sucked, I miss them and even though I try to explain to them why I am not home, they don't get it, not fully.
Xander has been doing well, no seizures or twitches since we moved his doses around, thank God for that. To be totally honest, every time he has twitches or a seizure I feel like I have failed him. I know it is unrealistic, but it is my perception; one that I try to change, but still nags at me. I don't show or tell him that, I stay strong for him, but it is a struggle, one that I am finding easier, with time, to win. He on the other hand is a rock, refusing to allow anything to bring him down, I love that he can be so strong. We talk about his seizures and try to have as much communication on that topic as possible, we do not want him thinking he is alone in this or that he cannot talk about it.
Things are good now, hopefully one day, by the grace of God, this will all be behind us; if not we will all keep keeping on as a family.
X starts his 2nd week of school tomorrow, it should be interesting since we had a meltdown on Thursday. The day started out with complaining, the walk to school was filled with much more complaining, and when we finally arrived to school he tried to run away. I had to walk him into school and when I left he proceeded to yell loud enough that I could hear him outside. About 40 minutes later we received a call from the school saying he was still crying, I had to calm him down via phone. The rest of the day was okay, we were reassured from the teachers that a lot of kids break down on Thursday and Friday since the thrill of school is gone and they are mentally worn.
The twins are doing great, crazy as ever and seem to enjoy the 7 hours a day they get alone with us. Earlier this week Sarah watched a program about the Rangers called "Making the Cut", they watched it with her with ever growing interest. Once it was over they were helping boost each other over the couch and telling each other "You can do it!", we definitely have our hands full.
The reason I have not posted in a few days is because I worked OT all weekend, on my days off we worked as well and since it was in the sun all day (94 degrees with what felt like 100% humidity) it drained me. Hopefully within a year I will be working days somewhere. Not seeing the boys all weekend sucked, I miss them and even though I try to explain to them why I am not home, they don't get it, not fully.
Xander has been doing well, no seizures or twitches since we moved his doses around, thank God for that. To be totally honest, every time he has twitches or a seizure I feel like I have failed him. I know it is unrealistic, but it is my perception; one that I try to change, but still nags at me. I don't show or tell him that, I stay strong for him, but it is a struggle, one that I am finding easier, with time, to win. He on the other hand is a rock, refusing to allow anything to bring him down, I love that he can be so strong. We talk about his seizures and try to have as much communication on that topic as possible, we do not want him thinking he is alone in this or that he cannot talk about it.
Things are good now, hopefully one day, by the grace of God, this will all be behind us; if not we will all keep keeping on as a family.
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