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Author: Subject: On May 31st around 2:00 a.m. I heard noises coming from another room. I got out of bed and
clevohardcore
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[*] posted on 6-7-2015 at 01:18 AM
On May 31st around 2:00 a.m. I heard noises coming from another room. I got out of bed and


I found my 9 year old son laying on our bathroom floor. He was using his right foot and pounding on the toilet. He was face down with his left arm in a horrible position. I began to call his name and asked him to get up, thinking he was having a bad dream or something.
I started to rub his back because it seemed he was in a dream or something and I couldn't understand what his responses were. He was mumbling and I couldn't make anything out. I then became more persistent and said "Jacob let's get up and go to bed". He yelled "I CAN'T". He was able to get that out.
I scooped him up and immediately felt his left arm had no response of feeling. Same with the side of his face and he could not stand as his left leg gave out. I yelled to my wife "we need to get him to the hospital". I placed my son in the back of our vehicle, my wife sat with him until we made it to the emergency room.
They thought a seizure, which he never had before. They said a ambulance from Cleveland Rainbow babies Children's hospital was coming for him. My wife went and I followed. I got there and they were already in MRI and I was notified it was a clot in his brain and he had a stroke. I had to sign some papers that no parent should have to sign.
They performed surgery immediately and removed it. A miracle. Jacobs brain is recovering and he is able to use his legs and walk and he is able to use his left arm. Little difficulty, but he is improving.
The next steps were to see what caused the clot, we found out his heart is enlarged and he has a rare affliction called restrictive cardiomyopathy. It is fatal. I'm so so scared. I want to help my son. I want to fix him, and I want him healthy. I am crying right now.
Every night is the same, I am at the hospital till 12:30 a.m. or so and return home to take care of Daisy, his dog and get some sleep. My wife will not leave the hospital. An hour and a half from now will be a full week since this happened. This is the most pain I have ever experienced, but it is nothing compared to what my son is dealing with.
I am trying to be strong for him and it is so hard. I just cry and find the words to ease his mind, but its hard. He is so bright and tries to rationalize what he understands about this, but keeps saying he wants to come home. He misses his home, room and his dog Daisy.
He is constantly poked with needles and I pray all of this would just go back to the way things were. We never knew he had any issue. Not a single Doctor, Nurse or Physician ever noticed anything out of the ordinary over 9 years. He played baseball and scored the tying run that morning. We had his favorite ice cream after the game and went on errands.
That evening my wife and him watched Jurassic Park 1 and 2 while I studied in the computer room. They also watched a documentary about how elephants were mistreated at the Circus. After the television program he came in around 10 p.m. Saturday night before bed and told me all about it. He went to bed and later that morning it happened.
I am telling you all this because, I don't know why. I just felt the need to. I have no idea who even still comes to this board from back in the day. Hug your children and always say I love you. I am scared of losing my son. He is our pride and joy, our world.




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[*] posted on 6-7-2015 at 03:17 PM


Sorry to hear about your little guy. I can't imagine what your going through. Hopefully the doctors can figure out and fix the problem. Keep your head up even I know it must me hard to dos so.
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[*] posted on 6-7-2015 at 03:42 PM


I don't know you, I live thousands of miles away from you on a different continent but my family and I are thinking of your son, you and your wife. Try to stay strong. I hope the doctors will find a way.



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[*] posted on 6-7-2015 at 06:36 PM


Thank you Mike, that really does mean a lot. Seriously, it really does.

DAK, I remember you from back in the day and people like you are the reason I came back here. I guess I needed that sounding board THORP has been for many of us.




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[*] posted on 6-7-2015 at 07:21 PM


Scary stuff! I can't even imagine anything like that happening to my kids. I will be thinking about your family and i hope everything comes out ok. Stay positive!
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[*] posted on 6-7-2015 at 07:56 PM


Quote: Originally posted by clevohardcore  
I want to help my son. I want to fix him, and I want him healthy. I am crying right now.
Every night is the same, I am at the hospital till 12:30 a.m. or so and return home to take care of Daisy, his dog and get some sleep. My wife will not leave the hospital. An hour and a half from now will be a full week since this happened. This is the most pain I have ever experienced, but it is nothing compared to what my son is dealing with.
I am trying to be strong for him and it is so hard. I just cry and find the words to ease his mind, but its hard.


Everything you said here, keep doing it. You can't fix him but you can keep being there for him and doing the things that matter for when he comes home. Ask the hospital if they will let you take Daisy in for a visit, some hospitals support the pets to help healing, see if this one does. Keep doing everything else you're doing. He doesn't want Superman, he wants a dad like you doing those sort of things for him.




A lot of people ask me what kind of music I like. I love "soul music". My "soul music" isn’t a style, genre or niche. It’s music that is genuine. It’s a painful lyric, a dirty bassline, it’s a harrowing vocal, it’s feedback, it’s an anthem, it’s a love song, it’s anarchy. I’ve got my personal favourites but in the end it doesn’t matter who or where it comes from... so long as it’s good and it's real.
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[*] posted on 6-7-2015 at 08:16 PM


Very sorry to hear about your son. I would be out of my mind. My 3 1/2 son had open heart surgery at almost 2 and that rocked my world and that is something we had some advanced notice of. Not sure how much I can do for you but if there is anything let me know. Make sure your wife is taken care of as much as possible mentally and if there is any way to get her any kind of slight mental break, try to... though it'll probably be imposible to pull her away and it's not like she would think of anything else. There is nothing outside of going home with your boy that can set your head right... Those walls of children's hospitals... we were at Boston Childers and I always tell people it's the most wonderful and horrific place all in one. I'm going to add you on facebook. Thanks Dak for the heads up of a Thorp member in need of some ears.



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[*] posted on 6-7-2015 at 08:35 PM


Clevo, I'm so sorry to hear you and your family are going thru this. This situation is unimaginable and unpredictable. We went thru some heavy health business related to seizures and such when my son was a toddler but nothinG this heavy.The quinns are pulling for Jacob.
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[*] posted on 6-7-2015 at 08:37 PM


Sorry to hear. Your family will definitely be in my thoughts. For what it's worth he sounds like a tough little guy.



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[*] posted on 6-7-2015 at 08:40 PM


Clevo sorry to hear this, I hope everything works out.



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[*] posted on 6-7-2015 at 09:19 PM


That's horrible Clevo. It's something no parent or child should suffer. I guess the one thing I'll add to that is to stay positive around him. If he thinks his parents are scared, then he will be too. I hope you bring him home soon, and you can all put this behind you.



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[*] posted on 6-7-2015 at 09:39 PM


I can't even begin to image what you guys are going through. Try to stay positive. Best wishes to your family.



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[*] posted on 6-8-2015 at 10:02 AM


so sorry to hear this.I hope he can come home soon.





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[*] posted on 6-9-2015 at 09:14 AM


Clevo stay strong! My heart is with you and your family.
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[*] posted on 6-10-2015 at 12:13 AM


Thank you very much, every single one of you.

My son received a defibrillator implant this morning. According to the Chief Cardiac surgeon he needed it while waiting for a transplant. He is considered a 1a candidate and that is considered urgent. We will have to travel to either Pittsburgh or Columbus Nationwide Hospital (bother were suggested) by the team of Doctors. Both locations are a 2 hour drive from the Cleveland area which is close considering. He will be able to come home tomorrow and he is very happy about that.




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[*] posted on 6-10-2015 at 08:47 AM


First thing I read this morning and I'm glad that it is positive. I'm so happy to learn that he will be able to come home tomorrow.
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[*] posted on 6-10-2015 at 08:15 PM


Glad to hear he is getting to come home.



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[*] posted on 6-12-2015 at 11:55 AM


My thoughts and those of my family are with you and yours. I'll do what ever I can to get your Go Fund Me Page noticed and I wish you all the strength in the world during this time.

I know what its like to have a deathly ill child and the best advice I can give you is take each minute one step at a time and don't let your imagination get the best of you. Children are the toughest and most resilient beings on the planet and you'll be floored with what they can endure and come back from.

I love you brother, be strong and find solace in your loved ones.

Give the little man a hug from all of us.




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[*] posted on 6-13-2015 at 01:31 PM


Martin
Your son and family are in my prayers. Try to keep your head up man, kids are tough, he's going to be fine.
The Thorp Warriors have seen a few other kids, of board members, pull through some tough times as well.




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[*] posted on 6-20-2015 at 09:23 PM


Quote: Originally posted by BKT  
I'll do what ever I can to get your Go Fund Me Page noticed and I wish you all the strength in the world during this time.


I missed this, what's the page?




A lot of people ask me what kind of music I like. I love "soul music". My "soul music" isn’t a style, genre or niche. It’s music that is genuine. It’s a painful lyric, a dirty bassline, it’s a harrowing vocal, it’s feedback, it’s an anthem, it’s a love song, it’s anarchy. I’ve got my personal favourites but in the end it doesn’t matter who or where it comes from... so long as it’s good and it's real.
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[*] posted on 6-22-2015 at 02:09 PM


http://www.gofundme.com/jacobmedical



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[*] posted on 7-5-2015 at 11:33 PM


As of right now my son, my wife and I are at Children Hospital of Pittsburgh and have been for several days. Originally we were supposed to come here for exams and other formalities on July 7th. However, during our visit to our local Doctor last Monday. The Doctor became concerned about his liver, which had dramatically increased in size.
This we found out was the cause of all of his pain when trying to sleep. Aside from that Jacob was doing well concerning blood circulation so she admitted him to Rainbows that day. The following day he was life flighted to Children Hospital of Pittsburgh and we followed by car. We had several tests and met with several Doctors throughout the week. However, because of the holidays, more tests and evaluations will be performed within the next couple days.
Last night we were able to watch the fireworks from the 7th floor of family room in the hospital. While Jacob sat on my lap and watching some of the local people set off fireworks, he said "Dad I wish this never happened and I want to go home and watch the fireworks at our place". We was not whining, his voice was so real, it hit me so hard. I told him, "You need to appreciate this, because if you didn't have enough strength and courage to make noises and wake me up that night, who knows how things would be."
The thing is, I understand what he meant, I had to say this because it is what it is. He wants his heart to be 100% normal and so do I. I want to protect him and shield him from all of this. I wish I could take this sickness and bad from him and make him better. This past month feels like a very bad dream.




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[*] posted on 7-8-2015 at 05:33 PM


marty,

i'm not religious, so it would be disingenuous for me to say that you and yours are in my prayers. still, this story is breaking my cold, black heart. i can't imagine what you're going through, but it really does sound like you're staying strong for your little guy (even if he doesn't realize or understand it).

i'm not sure if you still have my email address... or if the one you used to have still works. regardless, i'm always here if you want or need to talk to someone, be it via u2u, email, skype, or whatever. just let me know. no matter how busy i am, i will find time for you.

-t




Please read and, if you can, help out a friend: http://www.gofundme.com/jacobmedical.
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[*] posted on 7-9-2015 at 11:26 PM


Quote: Originally posted by random  
marty,

i'm not religious, so it would be disingenuous for me to say that you and yours are in my prayers. still, this story is breaking my cold, black heart. i can't imagine what you're going through, but it really does sound like you're staying strong for your little guy (even if he doesn't realize or understand it).

i'm not sure if you still have my email address... or if the one you used to have still works. regardless, i'm always here if you want or need to talk to someone, be it via u2u, email, skype, or whatever. just let me know. no matter how busy i am, i will find time for you.

-t





^^^ Thank you.




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[*] posted on 7-13-2015 at 06:45 PM


clevo, sent you current contact info via u2u. don't hesitate to ask.



Please read and, if you can, help out a friend: http://www.gofundme.com/jacobmedical.
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