Living with CP: the early years part 31.

Hello everyone. I hope you all are having a great day today. Today, I'm going to talk about what happened after my appointment with doctor Ellen Kitts. Let's get started.

As I said in my last entry one of the first things doctor Kitts said at my appointment that day was that she wanted to try to get me a new wheelchair because the one I had at that time was too small. Doctor Kitts has always said that anyone with Cerebral Palsy has to have a chair that fits them correctly.  She also doesn't believe in having operations unless it is absolutely necessary.

She also wanted me to start some occupational therapy, physical therapy and speech therapy. Keep in mind I have not had anything like that in about 10 years. A problem people with Cerebral Palsy have is if they don't keep their muscles loose, body tone gets very tight. So when you do work out again to get everything loose, it will probably really hurt at first.

Grandma felt like is was more important for me to be able to sit up in my chair and work on my computer before I could do anything else. So, with me going to therapy three days a week, we knew I could not do that and go to school, too. That would be too much for me in one day, so my grandma decided to take me out of school three days a week and I went to school two days a week. I was able to get a home tutor.

Let me just say that when you have Cerebral Palsy, you have to keep working with yourself your entire life, because your body does get tight.

In my next entry I'll talk about starting therapy. Have a great day everyone.

Living with CP: the early years part 30.

Hello everyone.  I hope you all are having a great day today.  In this entry I'm going to tell you all about my first appointment with doctor Ellen Kitts. I'm also going to tell you about some of the events that followed that appointment.  Let's get started. 

Me again.

Prior to the appointment, we received a call as to what we were to bring with us.  The lady on the phone said it might be three hours before we could see the doctor so we were ready for a long day. 

Steve from ATG Rehab went with us that day because he wanted to hear what she had to say.  We were sitting in the waiting area and we kept seeing this lady come out in the hall.  She had white hair and she would just come out and walk down the hall and actually pick stuff up.  So we thought she was the cleaning lady.  After they called my name and the nurse did all that pre-check stuff, here came the doctor and it was that lady we had seen in the hall.  I think my appointment was scheduled at 1 o'clock and I got in about 4. Does that tell you how booked she was? 

Uncle Tom, Me and my Dad.

When she came in Grandma told her everything about me. She checked me and my chair out everywhere.  We were there about three hours talking to her and the first thing she wanted to get me was some occupational therapy, physical therapy and speech therapy.  She wanted everyone to work together to try to get my trunk stronger so I could sit up better.  Next, she wanted a new chair for me because she had determined that the one I had was too small for me. 

In my next update, see where we go from here. Have a great day everyone.

Living with CP: the early years part 29,

Hello everyone.  I hope you all are having a great afternoon today. In today's entry I'm going to tell you about two special people that have helped make sure of two important things, both when I was young and to this day.  One being that I had the right wheelchair and the other being that I was sitting correctly in the chair.  I will be  jumping around a little as far as my timeline goes so bear with me.  Lets get started. 

Me.

You might be thinking I could just go out and buy any electric wheelchair and sit down in it, and I'm ready to go right?  Wrong!  Since I'm on Medicare and Medicaid, I'm only eligible for a new chair every five years.  Not every wheelchair company works with Medicare and Medicaid. Before you can get a chair they have to approve everything before they will pay for it. 

This is why I have used ATG Rehab all my life to get my chairs.  When I was about 14 and a half, I moved in with my grandma and grandpa. At that time I was falling over in my chair and had saliva falling out of my mouth.  My grandma knew we had to do something because I could not do anything.  She spent about a week on the phone calling all around and we found a doctor that specialized in Cerebral Palsy.  The problem with the doctor was that she only came to town once every three months for 2-3 days from Wheeling, WV. When my grandma called to make the appointment they said they were booked up for a year.  My grandma started crying on the phone and the lady said come on in.  This was at the former St. Elizabeth's Hospital in Dayton and the doctor's name is Ellen Kitts.

My grandma also knew that she would probably want some major adjustments on my chair and I had one guy down at ATG Rehab that did all the work on my chair named Steve.  That day of the appointment he cleared his schedule so he could go with us to the doctor that day. 

In my next entry I’ll let you know what happened when we got to see Dr. Kitts.

Living with CP: the early years part 28.

Hello everyone.  I hope you all are having a wonderful day today. I have to more stories about Gorman School.  I also have a story about my first electric wheelchair, so let's get started. 

A Power-Wheel Jeep.

During the last 3-4 years that I went to Gorman School, someone gave the school 3 of those big Power-Wheel vehicles that kids play in, two Jeeps and a fire truck. The 2 jeeps were normal for the kids that could use their hands and feet without any problem.  The fire truck, on the other hand, was highly modified. When you got on it you could drive it with a joystick.  I think the main reason the school got those was to help the kids with their reaction time and thought process, and of course for fun! 

My next story also happened 2-3 years before I left that school. One year someone came in and said that they wanted to design and build a playground for handicapped people.  I never saw anything like it before.  It had paths all over it for wheelchairs, it even had huge swings you could get on with electric chairs. They would strap the chair down first and you could swing. 

Even when I was young, I could not sit in a chair by myself without some sort of support.   I get all my chairs at ATG Rehab in Dayton, Ohio because they make sure I'm sitting right.  I have to have side supports on my chair so I do not fall over. The older I get the more difficult it gets because my body is always changing. 

In my next entry I'm going to tell you about two special people that helped me keep up with those changes over the years and even to this day.  Also, the extra work that one of them did to make sure everything was just right for me. Have a great day, everyone!

Living with CP: the early years part 27.

Hello Everyone. As I said previously, my mother and dad decided to take a family vacation to the Outer Banks of North Carolina and my dad really wanted his mother and dad and brother to go with us for a vacation.  Let me give you all a little background information on my dad's parents first.  They lived in Cambridge, Ohio on the side of a hill in a old fishing shack.  They still had an outhouse until the early 90's and they just were set in their ways.  My dad's mother and father have since passed away.

The car we took.

My Uncle Danny lived with them. He was an Army veteran.  He is one of those people that like to stay up all night and sleep half the day.  A day before we left, the three of us drove to Cambridge to try to talk everyone into going. Grandma and grandpa said no but Danny said yes. 

Uncle Danny, me, and m

My dad and Danny decided it would be better to drive at night, so the next night about 7PM we are off.  Everyone thought I would go to sleep, because we drove 23 hours straight but I stayed up with everyone else.  We stayed in a house on the beach for a week, the house was on stilts.  We did everything in that town, it was a nice vacation. 

Have a wonderful Friday everyone, I might have a entry Sunday if not I will Monday.

My Mom and Me.

Living with CP: the early years part 26.

Hello everyone.  I hope everyone is having a great day. The weather is great here today.  I have a question for you.  Do you think my grandma and grandpa took me on vacation that year even after I got that sunburn?  You will find out in this entry. I'm also going to tell you about the time me and my family went on a vacation to the Outer Banks of North Carolina.  So let's get started. 

A Bad Sunburn.

The previous night before I was scheduled to leave town with my grandma and grandpa on vacation, my mother called my grandma and told her what had happened that day with me getting sunburn.  My grandma knew I would be upset if we canceled the vacation, so she told my mother we would go ahead and go.  I could not even sleep because I hurt so bad. The next day came and I could not wear anything but a T-shirt.  When my mother took me out to the car and my grandma saw what I was wearing, that is when they realized how bad I was.  My grandpa even had a hard time putting me in the car. 

Aloe Vera. 

We went to Brown County State Park that year in Indiana and stayed at the Abe Martin Lodge, but before we left town we stopped at Meijers.  Meijers is a one-stop department store.  My grandma went in and got one of those big bottles of pure aloe vera gel, and before we even left the parking lot my grandma put that all over my body.  The first two days of that vacation we did not do anything but watch movies in the room.  After that, I was at least able to go do some stuff and it ended up being another nice vacation. 

My upcoming story also happened when I was about 11 years old my family decided to go to the Outer Banks of NC.  Have a great day everyone.

Brown County State Park Sign.

Living with CP: the early years part 25.

Hello everyone.  I hope you all are having a wonderful day today.  Before I get started on today's entry I want to tell everyone why I did not have an entry last Friday. We had some threatening weather as all of those tornados passed through the Midwest and my grandma did not feel comfortable staying here so we spent the day at a local shopping center where we thought it might be safer for us since we don’t have a basement. 

Good Samaritan Hospital. Dayton, Ohio.

Today, I have two stories for everyone today, and for the first one we have to go back when I was born.  Back then, my uncle owned a boat on Lake Erie and my grandma and grandpa were vacationing on his boat.  When they were gone, my mother went into early labor and they were up on the boat with no phone.  Someone from the place the boat was docked at was called and he was able to go to the boat to tell them that my mother was in labor. Lake Erie is about 3 hours from here.  My grandma and grandpa drove as fast as they could that night to get home. 

My mother was not living with my father at this time, and she did not have enough time to let him know that she was in labor.  Instead, she called my Uncle Tom who lived next door and he took her to the hospital and he had to act like he was her husband in order for him to go in with her but the hospital finally caught on. 

A Pool.

My next story happened when I was about 11 years old.  Every year my grandma and grandpa took me on a vacation somewhere.  It was that time of year again but this time it would be a little different.  The day before we left, I went swimming with my mother and my grandpa's brother and spent all day in the pool.  As you might have guessed, I got sunburned.  That night my mother put lotion all over my body.  I could not stand anything touching my body at all! 

In my next entry you will find out what happened next.  Have a great day, everyone!  

A Bad Sunburn.