Posts

[JamesVincent]

For no particular reason I wanted to share with you guys some posts I had made on Facebook over the past week, one was from tonight. As you all know my kids have problems, both physical and mental. Three of the posts are me talking up some of their problems. The background on the last one is that MaryKay had another seizure today, right after we got about 20" of snow and barely double digit temperatures.

[JamesVincent]

I'll do MaryKay first since she's the easiest and most subtle.

MaryKay is 14, kind, caring and brilliant. She's doing relatively well in 9th grade, the youngest freshman in the school, and taking college classes. When I went to get her disability she had been the only person, not just child but person, the examiner had ever had that finished the entire aptitude test. And had done so well that the examiner made it a point to say something to me about it. Yet the simplest things elude her. She could not, for the longest time, do something as simple as getting a fountain cup and putting the lid on. When we went out on Saturday to pick up groceries and to check on some friends we stopped by Speedway and got drinks. MaryKay got her cup by herself and I could see her smiling when she got it.She got her soda and I handed her a lid. Then her OCD kicks in. Every time she puts a lid on she punches the other button and sets the lid down. She then opens the straw and puts it through the lid. And then she puts the lid on the cup. She struggled a little bit and I was getting ready to ask her if she needed help when she finally got it. And then she smiled again. The same child whom I taught 3D rendering when she was 6 and makes mini movies on the computer or her 3DS is proud of herself for getting the lid on her fountain drink. It's a struggle for her that's very real and has been, in the past, a source of ridicule by her family and others.

Some of these things I talk about don't show to others yet I see them on an almost daily basis. If you don't live with a special needs child you would never understand the struggles some of them face doing even the simplest things in life. A lot of people who meet Mary for the first time just see a blonde haired, blue eyed teenager who can't tie her own shoes and leave it at that. The reason she can't is because she can't. Has nothing to do with being lazy or a failure, her mind just does not work in that direction. We have tried many a time to work on it and she gets very frustrated trying to understand. Yet I have seen her get on a computer and make animation like nobodies business.

[JamesVincent]

Christopher's story takes a little imagination.

On Friday we had some more really bad weather. Snow, temperature in the teens, wind, all the fun parts of winter. We had completely cleaned the driveway on Thursday and had to redo part of it Friday. That evening I had gone inside, my leg was killing me, and Chris was in and out. I finally told him to stay inside since the temps were in the single digits. He came to me and said one of our neighbors had gotten stuck and he needed to help them. I asked him to stay inside but he would not. I made him put on his heavy suit and he went out to help. A little while later I hear a thump and turn around to see Chris laying on the floor. He had gone out and worked himself to the point where exhaustion and the temperature had triggered an asthma attack. Needless to say we spent 4 hours in the ER Friday night/ Saturday morning. We didn't get home until a little after 3am.

Saturday Afternoon we went out to check on some friends and get groceries. During the day it had snowed some more and sleeted so the driveway was messed up again. When we got back a neighbor and I cleaned the driveway again and I made Chris go inside to rest. About 5 minutes later I look up to see Chris shoveling my parking spot. I tell him again to go inside. About 5 minutes later I look up to see him throwing salt down where we had cleaned.

A lot of people over the years have called Chris lazy and stupid. Chris will work himself to death to help another person and then give them the shirt off his back to boot. He operates, at 12 years old, on about an 8 year old level. His learning disability is an actual disability. He struggles constantly in school and in life trying to understand what others take for granted. Yet I have never seen another person or child who will give so much and so selflessly. And I have never seen another person be ridiculed so much for being that way.

[JamesVincent]

Alyssa's story is different.

Alyssa makes a very big deal out of being independent. Which, for the most part, she is. She struggled when she was younger with separation anxiety and had some very hard times during our separation and divorce but bounced back well. Yet she still struggles. When we went out Saturday she had decided to stay at home and play on my computer. So we went out and did the things we needed to do. While we were at a friend's house my phone rings. I look down and, sure enough, it's the house phone. I answer and Alyssa says, when are you coming home? I said, in a little bit baby, what's wrong? She says, nothing. I miss you when you are gone for more then an hour.

Alyssa, all of her life, has struggled with anxieties and self-esteem issues. To this day she constantly dreads interaction with other people since she thinks everyone will call her fat or call her ugly. She gets almost straight A's in school and is a very outgoing child. Yet a lot of times when we go to the store she will not go because she fears that people will look at her and think she is fat. Despite all of her protests otherwise she is very self-conscious of her appearance and takes great effort to brush her hair out and dress nicely. She also takes a lot of things to heart and has some rather bad issues with her emotions. Many a time she has come to me crying because of what she felt other people were saying about her. Her mother used to call her a whinebaby over her self-esteem issues and others have too. And so she fights.

[JamesVincent]

I hardly know where to start on this one. If I'm rambling please try to read it anyway.

There is a reason I never talk bad about police. Not only have several of my closest friends been LEOs, some of my family has been too. On the way home from the hospital I lost control of the truck on a hill and slid about 100' backwards back down the hill. I bounced off a couple of trees and ended up with my rear tires hanging off a 20' drop. With nothing else to do I called 911. Morehead Sheriff's office was flooded with calls so they sent me to the Kentucky State trooper HQ. They promised to send someone out. I called Chris at home to tell him what happened and he walked to the truck with our snow shovel. I was running low on gas so I had to shut the engine off and wrapped Mary up in a blanket I keep in the truck. A State Trooper showed up and stayed there for over 2 hours so that Mary could sit in his truck and keep warm.

It took about an hour and a half for a tow truck to show up. Meanwhile I had sent the twins to walk home since we were only about 5 minutes from home. Between me driving and the tow truck pulling we got the truck out pretty quick. After we got the truck out we all pulled down the hill and let the State Trooper pass. The tow truck driver called a friend of his who went to the top of the hill to meet Mary and drive her home. The Trooper drove up until he got right before where I slipped and stopped. Then him and two of the tow truck guys walked MaryKay up the rest of the hill where the guy picked her up and took her home.

I ended up leaving the truck off a side road at the bottom of the hill and walking home myself after they left.

All of them, tow truck drivers and State Trooper, went well beyond their job to help a little girl whose seizure had left her too weak to walk across the road, much less the 1/2 mile or so home. And when she did have to walk they held her hand and made sure she was fine. And for a complete stranger to come and pick her up, knowing the reason was it so icy that no one could drive it was just as extraordinary. God sends us heroes sometimes, not always in uniform or even doing something heroic, but all of them are my heroes right now and there could never be enough thanks to give them.

signed An extremely grateful Dad.

[JamesVincent]

There's no way to really sugarcoat this or to make it sound better then it is so I'll tell you a little about we know.

Alyssa is very sick. She has been for about a month or so. She is not sick in the flu or virus sense, the best thing the normal doctors can come up with is that her previously mild seizures have intensified and she is in the beginning stages of epilepsy. She has become more and more confused, has started to lose her balance. Her short term memory seems to be coming and going, she often forgets where she is or what she was doing. She has continuing headaches and pains in her neck. Her motor skills have become somewhat degraded, her ability to walk straight seems to be affected.

She often comes in my room and sits with me. When she does you can see her eyes moving but she doesn't really see anything. She has been to the regular doctor about 5 times in the past month. Her vitals are fine, her blood pressure and what not. They have done two or three rounds of bloodwork, including tests for thyroid defencies, all normal. I took her to the hospital last week because she was complaining of short, stabbing pains in her chest. Same thing, no explaination, the only thing they found was a beginning UTI, which they treated. While we were there she asked me if the lights were blinking. I told her no, then she said it kept going dark for her and she thought the lights were turning on and off.

The periods of time she has where she is completely lucid have been shrinking also. Alyssa had what they used to call staring seizures, where she would blink out for 15-20 seconds and would become confused if she missed something. Now those periods last for an hour or more. During those periods she can't communicate well, she doesn't seem to understand what is going on. Multiple times during the day she will call my name and then look at me. I'll answer and she won't. She doesn't even seem to recognize me or what she's doing, saying or seeing.

She goes in on the 3rd for a MRI and then sees the nuerologist on the 8th, both of which took some great effort on my doctors part to get them in so fast. I'm going in on Monday to get her paperwork done to be homeschooled until we get a handle on what is going on. The most important part of my interview at Lowe's was that I told them flatout my daughter is very sick and her doctor's appointments will be my highest priority. Fortunately I have enough experience and ability that they still wanted to hire me on a floating schedule. And were very sympathetic to what we're going through. I'm also going to try to get a home nurse that will come and check on her when I'm at work.

That's about all that is known at this time. To say I'm a wreck at times would be a mild understatement. Especially when she lays in bed with me and looks at me and smiles. She can't say anything but she smiles. Sorry, got to stop.

[Pottapaug1938]

Hey -- take care of what's important. We'll still be here when you need a break, now and then; and we're all hoping for the best for Alyssa, you and the rest of your family.

[JamesVincent]

Quick update. Alyssa's MRI was completely normal. All of her bloodwork has been normal. Her thyroid test was normal. Saw her nuero and my doctor this week, both of them seem to feel that she is suffering from Partial Seizure Syndrome, possibly complex, and are treating her for such. In for an EEG on the 29th and then further visits.

[Judge Roy Bean]

James - I understand the situation. A grandson went through years of debilitating health issues with seemingly endless tests and treatments which eventually resulted in two surgeries and a number of "procedures." At some point, with little or no explanation the symptoms went away and he has little or no remaining issues other than a diet one has to be careful with when you no longer have a gall bladder. Whether removing it was a solution is still open to debate.

Medicine by committee is our only methodology in today's environment. It is a frustrating and two-edged sword.

Best of luck.

[JamesVincent]

hi everyone. been gone afew days.

i had a stroke wedsnesday night. i just gome from the hospital, i was uks acute care unit. i temorarily lost the use of speech, which has returned mostly. more importantly i lost all use of my left side, somw has returned, lost all use of my lower face muscles. took pretty much a full day to talk again and its still not good. i cant open my mouth wide to talk louder. my left arm will bend at the elbow and i can use my fingers somewhat and my foot i can use, nothing else on the left.

not real sure what im doing right, have a lot of thinking to do and catching up. will be on here on and off.

[eric]

hi everyone. been gone afew days.

i had a stroke wedsnesday night. i just gome from the hospital, i was uks acute care unit. i temorarily lost the use of speech, which has returned mostly. more importantly i lost all use of my left side, somw has returned, lost all use of my lower face muscles. took pretty much a full day to talk again and its still not good. i cant open my mouth wide to talk louder. my left arm will bend at the elbow and i can use my fingers somewhat and my foot i can use, nothing else on the left.

You have my sympathies - my wife had a stroke a few years back so I know what you're dealing with.

not real sure what im doing right, have a lot of thinking to do and catching up. will be on here on and off.

The basic thing to remember is that everything is still there - your body just has to learn where...

[bmxninja357]

hope your feeling better soon james.

peace,
ninj

[Fmotlgroupie]

Good luck, you certainly are in our thoughts.

[Judge Roy Bean]

Our prayers are with you, James.

Because I'm as old as I am and have a large extended family and network of friends, I can also tell you I have personal experience with stroke victims. In the main, today's therapies do make progress, albeit slow. Don't get impatient. Focus on the therapy and what they suggest you do - they have experience and know what works and what doesn't.

A slightly-older sibling has regained most of her communications skills after over two years of comprehensive therapy. In the beginning, talking on the phone was almost impossible; there were simply huge gaps in the phrasing where words wouldn't come. It also could take her twenty minutes to compose a two-or-three sentence email.

Today, you wouldn't know she had a stroke unless you bring up a topic she hasn't thought or talked about in the last few weeks or months. Vocabulary has to be reinforced in order for her to use it and she attributes the skill of her therapist for giving her the exercises and motivation to keep rebuilding her abilities one slice at a time.

Hang in there.

[Famspear]

Take it easy, friend, and best of luck to you.

[notorial dissent]

James, as others have said, my thoughts and prayers are with you and your girls.

[The Observer]

James, hang in there and it will come back to you in stages and in time. I know you will work hard at it, because you have two kids that you love and want to be there for.

[wserra]

I'm sorry, James. I too have been around a couple of family members who were stroke victims, and JRB has it exactly right. Things may come back quickly or they may not, but they do come back.

All the best.

[webhick]

That sucks. I hope that therapy works out for you.

[JamesVincent]

another reason to the q. best friends i never met