The past few weeks have been filled with issue after issue. I am not going to lie, its pretty scary. Most nights I lie awake scared to death because I never know when that moment will be that something hits that is just not right and all of a sudden Jacob is a completely different kid. We have already experienced a little bit of that and to see him decline is never something we want to see. But in all reality is that Jacob is suffering from a disease that, over time, is just going to get worse and worse. And I dont think we will ever fully understand why or accept that this is our new way of life. Jacob catching the flu or even a small bug is one of my biggest fears. If Jacob gets sick and for whatever reason his body does not have enough energy to fight it, it could be deadly. And that is where we are at right now.
Jacob started a new seizure med about a week and a half ago. It has been going great because I had only noticed 1 seizure and that was early in starting the med. Well a few days ago Jacob came to me and said that he had a rash on his arm. I told him he was just seeing things and it was not a rash. About an hour later he came to me again and again said...mommy, I have a bad rash! So I looked at it and WOW he was right! He had spots all over his body. Arms, legs, back, chest, neck...everywhere!! So I called the doctor because I knew this was just a little virus rash but I wanted to get a prescription and knock this out as soon as possible. He had thrown up the day before and was running a fever. We showed up at the doc and he confirmed exactly what I thought. But he didn't give us a prescription. He just said we are just going to have to wait it out. Nothing they can do about it. But to keep him inside and not take him out in the heat because it will make it worse. Well we listened to him and kept Jacob inside. Well the next day his fever started getting higher and he was just acting very lethargic and yucky. By the night he was really sick! His fever was so high and he just wanted to sleep. I couldn't sleep at all. I was up every hour taking his temp because I was thinking I needed to take him to the ER because his temp was raising and I didnt want him to have a seizure. Around 2 am his fever started to come down so I went to sleep. Woke up a few hours and took it again and it was low grade so I felt good about everything. That is, until he woke up. When I saw his body I was SHOCKED! The spots had turned into huge blotches and it was ALL OVER HIS BODY! It was so bad. I had never seen a rash this bad before. Tom said that he was going to call the pediatrician and see what he wanted us to do. He called and he was not in so he left a message with another one of the doctors. They called me a few min later and said we need to get to the ER right away! I am so glad we did because we had no idea how sick Jacob really was. When we got in they put us right away into a room and we saw a doctor within a few min of being there. They did a bunch of tests on him and they just figured that it was just a really bad virus rash. They called in the neurologist and he said that it was a reaction to his seizure med that we just put him on.
No one truly knows how sick he was. I didnt even know how sick he was, until a doctor had told me. Jacob was in a crisis. He was so dehydrated that his body was shutting down! His body was getting attacked and he did not have the energy to fight it. So instead it just started to shut down. They had 2 IVs in him pumping all kinds of different things. They had 2 kinds of fluids to help him get out of this dehydration crisis he was in. And then on top of that they had meds to stop the reaction. They told me that when they have allergic reactions like this, they normally give the person steroids to stop it and clear it away. But in Jacobs case, the kearns sayer syndrome that he has, there are studies that showed that when people with this syndrome were given steroids, it was deadly. So the doc did not want to chance it and give it to him. So we had to stick with normal allergy meds and hope that it would help. Which it did...but it just took longer.
Its never good when the doc tells you later on, that its good we caught it when we did. If we would of gone a few hours later...we probably would not be coming home with our son! Knowing that, I have changed everything about the way I view life. It is so precious and you never really understand how fragile life is, until you are faced with the end of it. Seeing how fast things can change with him...I have had to change a lot of the way we live our lives. I can not let Jacob get sick again. I can not let him be put in this situation again. I love my son so much and it kills me to think that his time on earth can be cut short because he got a little cold or the flu;.
Just please keep Jacob in your prayers always! We need them more than ever.
This is a blog about Jacob, who is 10, and his fight with Mitochondrial Disease (Kearns Sayre Syndrome) and Autism.
Saturday, August 10, 2013
Friday, July 19, 2013
Good evening. At least my perception is that it is evening since what I see when I look out my window is a shade of darkness forming over the land.
I wanted to take time to explain what this "Invisible" disease is. Mitochondrial.
Ever look at a car and think "man she looks sweet".... a car folks, not your wife, follow me here. Then you decide to drive the car and there are problems. Some much more major then others. For instance you have a engine with mounts that are loose. Or even spark plugs that are going out. Even a battery leaking. As I said some major, some not so much. But over time, if it goes untreated, the engine will eventually stop, at what point, you dont know, until it is too late.
Let me pose another question to you. Say a doctor came into the room on a routine check up and said, "I want to prepare you so I want you to go home and look this up, Mitochondrial."
He doesnt give a diagnosis, he just tells you to go look up a word. Doesnt say anything else about it on that visit. Here is what you find if you google it. http://www.medicinenet.com/mitochondrial_disease/article.htm
We went through the test and yes, the doctor was right but we knew what we were walking in to. We just didnt know the magnitude it would take on our lives.
Let me pose another thought. When you are diagnosed with something, you think the worst, and hopefully best case scenario. What if the BEST case was you would live to be 30 years old, if you beat everyone else before you that had the same thing. It is rare to find anyone who was diagnosed by age ten to live past age 30. Let that sink in. How old are you now? I assume since you are reading this you are probably over the age of 12, so half your life? Maybe even your life 2 times over?
How do you react to knowing your life is going to end? Do you worry? Do you just let your parents do the worrying? Would you want to know? I remember as a kid playing with my best friend Scott. We would always sneak out quija board but would NEVER ask how old we would live to be. What if someone you knew had the answer? Would you want it from them? Would you even notice that nothing is really wrong with you if your parents protected you from it?
Before you judge, think about it. Jacob has no idea what all this mean. He doesnt read this blog. Nor do we ever want him to. We have to protect him. His life is lived everyday to the fullest. He goes to baseball games, movies, swims.... he lives a normal life and does normal things. What he doesnt know is at some point, it is going to end. I dont say this to get pity from any of you. I dont want it. I dont need it. I am simply replaying information that most of you dont see, ask for, or are ignorant to. I guess blind would be a better word.
As I write this blog, this is all from my heart. If I offend you, dont take it personal. I am writing this in hopes that you all see Jacob as a fragile boy, who needs love. As parents we wont see him grow up, get a great job and work it for many years, able to retire and have grand kids. He will never see that. Will you? What if I took that from you? Would you want all of the sudden people to treat you differently? Because I promise at some point, someone will notice that you are not normal and will make fun of you, simply because "you have an issue".
I hear all the time two things that piss me off. And pardon my language but this is going to be raw and uncut. I am not going to go back and edit this.
1. Jacob acts fine. Lets address that. Do your kids freak out after running a little bit, EVERYTIME they run? Do your kids cry for literally no reason at all, EVERYDAY for hours at a time? Do your kids trip on air EVERYDAY? We spent the week up at a family members house this past week. Its amazing. But no one saw Jacob have a seizure first thing this morning, and then his attitude the rest of the day. It was bad. I mean yelling, for no reason. Biting, punching.... Yeah he did that. But lets get one thing straight. He isnt stupid, or handicapped in the way he does things. He has a normal IQ. He just has a few things that make him act out. Mitochondrial and autism are those things. And paired up they are a pain in my..... Dont tell me my kid acts fine. Watch him closely next time you are around him. He will complain at least 3 times, that his belly hurts, his legs hurt, his head hurts and his ears hurt. Pay attention. Prove me wrong, I am down for it.
2. Jacob looks fine. I think I addressed this very well at the beginning. But seriously, looks can be deceiving. His legs are going out. He cant stand for long periods of time, and he is full of crap. No seriously, he cant poop. Crappy eh?
You know, I have been thinking of writing for some time but in reality, as his father, I dont need to justify anything we do as parents for Jacob. He knows we have his back. I just wish everyone else did. Dont tell me "we have his back" yet you wont get to know him. You know how many sleep overs he has been invited to in his 10, almost 11 years on this earth? Zero. I know we can all count that high. Has anyone offered to watch him WITHOUT his brother? Naw. Why is that? He is normal right? Is it that you just dont like him? Well his brother gets a ton of praise. Anyone would watch him. But why not Jacob. Tell me why that is? I REALLY want to know. Maybe you need to think about that for a moment. I have time.......
Sorry this is kind of a moan post but I want people to accept Jacob. Love him, like we do. Dont EXCLUDE him from things anymore. If anything he should be invited before other kids, because his time is short. And yeah I do want you to feel bad for him. Why? Because we would feel bad for you if it was you or your kid.
Dont feel bad for me or Brit. We got this! But have the courtesy to feel bad for Jacob, because he doesnt have the time we do.
I wanted to take time to explain what this "Invisible" disease is. Mitochondrial.
Ever look at a car and think "man she looks sweet".... a car folks, not your wife, follow me here. Then you decide to drive the car and there are problems. Some much more major then others. For instance you have a engine with mounts that are loose. Or even spark plugs that are going out. Even a battery leaking. As I said some major, some not so much. But over time, if it goes untreated, the engine will eventually stop, at what point, you dont know, until it is too late.
Let me pose another question to you. Say a doctor came into the room on a routine check up and said, "I want to prepare you so I want you to go home and look this up, Mitochondrial."
He doesnt give a diagnosis, he just tells you to go look up a word. Doesnt say anything else about it on that visit. Here is what you find if you google it. http://www.medicinenet.com/mitochondrial_disease/article.htm
We went through the test and yes, the doctor was right but we knew what we were walking in to. We just didnt know the magnitude it would take on our lives.
Let me pose another thought. When you are diagnosed with something, you think the worst, and hopefully best case scenario. What if the BEST case was you would live to be 30 years old, if you beat everyone else before you that had the same thing. It is rare to find anyone who was diagnosed by age ten to live past age 30. Let that sink in. How old are you now? I assume since you are reading this you are probably over the age of 12, so half your life? Maybe even your life 2 times over?
How do you react to knowing your life is going to end? Do you worry? Do you just let your parents do the worrying? Would you want to know? I remember as a kid playing with my best friend Scott. We would always sneak out quija board but would NEVER ask how old we would live to be. What if someone you knew had the answer? Would you want it from them? Would you even notice that nothing is really wrong with you if your parents protected you from it?
Before you judge, think about it. Jacob has no idea what all this mean. He doesnt read this blog. Nor do we ever want him to. We have to protect him. His life is lived everyday to the fullest. He goes to baseball games, movies, swims.... he lives a normal life and does normal things. What he doesnt know is at some point, it is going to end. I dont say this to get pity from any of you. I dont want it. I dont need it. I am simply replaying information that most of you dont see, ask for, or are ignorant to. I guess blind would be a better word.
As I write this blog, this is all from my heart. If I offend you, dont take it personal. I am writing this in hopes that you all see Jacob as a fragile boy, who needs love. As parents we wont see him grow up, get a great job and work it for many years, able to retire and have grand kids. He will never see that. Will you? What if I took that from you? Would you want all of the sudden people to treat you differently? Because I promise at some point, someone will notice that you are not normal and will make fun of you, simply because "you have an issue".
I hear all the time two things that piss me off. And pardon my language but this is going to be raw and uncut. I am not going to go back and edit this.
1. Jacob acts fine. Lets address that. Do your kids freak out after running a little bit, EVERYTIME they run? Do your kids cry for literally no reason at all, EVERYDAY for hours at a time? Do your kids trip on air EVERYDAY? We spent the week up at a family members house this past week. Its amazing. But no one saw Jacob have a seizure first thing this morning, and then his attitude the rest of the day. It was bad. I mean yelling, for no reason. Biting, punching.... Yeah he did that. But lets get one thing straight. He isnt stupid, or handicapped in the way he does things. He has a normal IQ. He just has a few things that make him act out. Mitochondrial and autism are those things. And paired up they are a pain in my..... Dont tell me my kid acts fine. Watch him closely next time you are around him. He will complain at least 3 times, that his belly hurts, his legs hurt, his head hurts and his ears hurt. Pay attention. Prove me wrong, I am down for it.
2. Jacob looks fine. I think I addressed this very well at the beginning. But seriously, looks can be deceiving. His legs are going out. He cant stand for long periods of time, and he is full of crap. No seriously, he cant poop. Crappy eh?
You know, I have been thinking of writing for some time but in reality, as his father, I dont need to justify anything we do as parents for Jacob. He knows we have his back. I just wish everyone else did. Dont tell me "we have his back" yet you wont get to know him. You know how many sleep overs he has been invited to in his 10, almost 11 years on this earth? Zero. I know we can all count that high. Has anyone offered to watch him WITHOUT his brother? Naw. Why is that? He is normal right? Is it that you just dont like him? Well his brother gets a ton of praise. Anyone would watch him. But why not Jacob. Tell me why that is? I REALLY want to know. Maybe you need to think about that for a moment. I have time.......
Sorry this is kind of a moan post but I want people to accept Jacob. Love him, like we do. Dont EXCLUDE him from things anymore. If anything he should be invited before other kids, because his time is short. And yeah I do want you to feel bad for him. Why? Because we would feel bad for you if it was you or your kid.
Dont feel bad for me or Brit. We got this! But have the courtesy to feel bad for Jacob, because he doesnt have the time we do.
Thursday, June 20, 2013
This is Mito through Jakes eyes!
I watched a video today about a girl who made a video for her high school project about her brother that has mitochondrial disease (mito) and it made me teary, of course. But it was such a great example as to what mito really is! So I thought I would do my own little version of that. This is mito through Jakes eyes. I have so many more pictures I could of put on here, but I think this is good enough. This kid has been through SO MUCH! I cant even begin to say how much getting this service dog will help him. I hope by looking at some of what Jacob has to deal with on an every day basis, you will understand...just a little bit..what it is like to live with this horrible disease! And what it is like for us, as his family, to watch him suffer and not have a lot to help him with. This is a big reason why we need a service dog for Jacob. This dog will help in SO MANY WAYS! This will give Jacob the chance to have a "normal" life and not have to rely on mom and dad 24/7. This will give Jacob the friend that he so desperately craves! This will give mom and dad the piece of mind that he is being watched over. It will help us sleep better. It will help HIM sleep better. When we go to the hospital, it will help Jacob not get so anxious. When we are in places with a lot of people where Jacob normally would have meltdowns, she will help him be calm. All of this is so important to us. Getting this sweet dog means so much. More than anyone knows.
And this is mito through Jakes eyes...
This is when we first started to notice things...his droopy eyelids! This is right before his very first surgery.
His first hospital visit for a clean out
Exhaustion because he ran out of energy
Getting his gtube so he can stay hydrated and not get so dehydrated every day
The concern in his little brothers eyes
Autism! And having meltdowns!
Things being too loud
His horrible constipation and distended belly
More surgery
the MANY ER visits
The MANY tests and xrays
Getting sick when his body just doesnt have enough energy to run
Being wheelchair bound because he just cant walk anymore
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