GroovyWheeler
Earning My Ears
- Joined
- Dec 6, 2004
- Messages
- 117
I'm 25 years old, and was born 7 weeks premature with Apert Syndrome. It's a very rare (1 in 150,000 live births each year) craniofacial syndrome that causes the hands and feet to "fuse together" before birth, as the result of an amino acid not joining with the other. The skull and mid-face has a caved-in appearance, requiring extensive surgeries.when the child is born, at age 6, and when he/she is 14 years old. Hearing loss in one/both ears is common, because of the bone structure in the ear. I'm profoundly deaf in my left ear, and am losing hearing in my right ear. I also have bladder incontinence (which is very rare to have, for someone with Apert's, but I fgured that the scoliosis curvature had something to do with me getting it) to which I wear Tranquility briefs at night and during the day.
I had my first seizure as a baby, 2nd seizure when I was at middle school in the 8th grade. I was out on recess and had slipped and fallen on a wet, grassy hill, unable to get up as the impact of the fall had "shocked/frozen" my entire body. I don't know what type of seizure the first one was, but my mom told me that the second seizure was a grand mal, after the school called 911, and the ambulance came and took me to the hospital. I remember waking up from the fall, once the paramedics got there, but couldn't understand what was going on. The second seizure resulted in a blood clot, which required me to be transported down to Sacred Heart Medical Center in Eugene for an overnight stay, about an hour away from home, to be put under the care of a pediatric nuerosurgeon, as Good Samaritan Hospital here in Corvallis, didn't have one at the time.
I'm one of many kids and adults with Apert's, on www.apert.org. The pictures that are on my section of the website, are a little old, but I'm going to be sending some recent ones to the site master, soon.
At the moment, I'm currently awaiting my 3rd ear surgery (first two were to try to fix the ear bones, which resulted in profound hearing loss in my left ear, after they both failed), to install a BAHA hearing aid to which a screw has to be surgically implanted into my skull, for the hearing aid to be attached to. I'm excited about it, because after hearing good reports on it from doctors and my audiologist, it would be able to make my hearing more "normal". At the moment, I'm wearing a headband-type bone conduction hearing aid, and it helps me hear better, but gives out a lot of static feedback, to which it makes it hard for me to understand anyone who's talking to me, even at my good ear.
In 1999, I began having trouble walking, which resulted in a lot of falling episodes, and it was then I started requiring the use of a wheelchair as my primary care doctor discovered that I had Congenital Hip Dysplasia and "moderate" scoliosis, which would later progress to almost severe. My mom purchased my first wheelchair, a Quickie 2 ultralightweight, as she knew that this was going to be a long-term kind of thing, and she didn't want to have to rent one.
I'm glad she did, because we had a hard time trying to get a doctor to help us with what was going on. We got sent to every hip specialist from Portland, OR; to Seattle, WA; to Eugene, OR; and finally, to the Mayo Clinic in Rochester, MN. My mom and I both really liked Mayo Clinic (we still do, to this day), especially the hip surgeon, Dr. Dan Berry, who we felt like we personally knew because he was from Corvallis, too. A Native Oregonian!!!! He waited a year before he wanted to do anything, and by the time he saw me the following year, on October 28th, he agreed to do a total hip replacement surgery, two days later. I spent one week at Rochester Methodist Hospital, on the orthopedic floor, and two weeks in the rehabilitation unit at St. Mary's Hospital (also a part of Mayo) for physical therapy.
I wasn't really able to walk after I had the hip surgery, as my right leg had "contracted" within a year, and made walking/weight-bearing on it, very hard. It wasn't until Botox injections were ordered, and also physical therapy was required. The physical therapist tried using an Ankle-Foot Orthosis on my right leg, to help keep my ankle straight, and to see if there would be any improvements, and as soon as he strapped it onto my leg, I took my first tentative steps with the aid of a Kaye reverse walker that he had, that I haven't taken in 2 years since the whole ordeal with the hip, began. He knew immediately what I needed, so he brought in a brace guy to fit me for a brace of my own, and brought in a wheelchair seating/mobility specialist, whose name was Tim Kelly (who I actually personally knew, because he was my Sunday School teacher at one time, and fitted me for my very first seating system, to be installed on my manual wheelchair) to fit me for my new Kaye walker.
The year before I got my new brace and walker, Tim fitted me for my very first "car", my Quickie S-525 power chair, with a candy-purple frame color (to which I picked out myself) special seating system in it, with all of the supports (posture chest strap, headrest, and a deep-contoured back), to help keep my back straight. He also ordered a wheelchair tray for it, for "extra" upper body support for my back, and to serve as a table for school, and when it was needed. My mom and I decided that a power chair was needed, because since our house is on top of a steep hill, she wanted me to have the chance to get out of the house and have access into town, especially in the summertime, and not be stuck in it all of the time. Of course, when a family member gets a new power chair, especially if it's a son/daughter, the parent would then have to invest in buying an adapted van for it. And that's exactly what my mom did.
Today, after a recent visit to Mayo Clinic last summer, just to see how my hip implant was doing, I got newly diagnosed with Dystonia. I also discovered that the hip dysplasia is back, in my left hip. It doesn't bother me too much, because after having undergone 45 surgeries (46, with the ear surgery coming up) in my lifetime, I've learned that dealing with chronic pain (especially if it's in your back, which is causing the most trouble for me), is no big deal. I'm glad for my power chair, glad for my manual wheelchair (which is the only one of the two wheelchairs that folds, as my power chair is HUGE and has a rigid frame) which we use for travel on an airplane (and because it's so light in weight, easy for my mom to lift in and out of her car), and my Kaye reverse walker (which gives me no back pain at all, and helps keep my posture straight when walking short distances/for short trips where taking my manual wheelchair wouldn't be necessary), and glad for my purple-print AFO (purple is my favorite color), which helps me walk, even though I limp a lot, with the way my back is.
I am my mother's "dependant" for medical insurance, because of my special healthcare needs, and the fact that her medical insurance cioverage allows us to travel to the Mayo Clinic in Minnesota every two years (in the past, to San Francisco, CA for craniofacial appointments and surgeries, as well as Toronto, Ontario, Canada when I was a baby and had my first skull surgery there), to see my hip and spine specialists, as well as other doctors when needed. I will never go on Medicaid/Medicare, or even SSI/SSDI. Even though I still have to be my mom's dependant, that hasn't stopped me from becoming engaged to a great guy named Dan, who developed Traumatic Brain Injury at 2 years old, and we're getting very excited about going through a "ceremony of commitment" next summer. I'm excited for that, because it means that I'll be "leaving the nest", and the last one out of my two brothers, to do so. I'm the only one in my "close family" with a disability, and the youngest of three. My two brothers are 40 and 43 years old.
People have told my mom how lucky she is, to have a special daughter like me, because after having me, all of the other children she had tried to have, she wound up losing either at birth/before birth. That, and when I was born, doctors kept encouraging her to have me placed in an institution because she told them that she wasn't sure if she wanted to deal with, what she's had to deal with, with me, in the last 25 years, and counting. Let alone, letting me live my life, like I am now. She told me once that she was glad it all turned out great, and that she wouldn't trade having me, for another daughter.
Samantha
I had my first seizure as a baby, 2nd seizure when I was at middle school in the 8th grade. I was out on recess and had slipped and fallen on a wet, grassy hill, unable to get up as the impact of the fall had "shocked/frozen" my entire body. I don't know what type of seizure the first one was, but my mom told me that the second seizure was a grand mal, after the school called 911, and the ambulance came and took me to the hospital. I remember waking up from the fall, once the paramedics got there, but couldn't understand what was going on. The second seizure resulted in a blood clot, which required me to be transported down to Sacred Heart Medical Center in Eugene for an overnight stay, about an hour away from home, to be put under the care of a pediatric nuerosurgeon, as Good Samaritan Hospital here in Corvallis, didn't have one at the time.
I'm one of many kids and adults with Apert's, on www.apert.org. The pictures that are on my section of the website, are a little old, but I'm going to be sending some recent ones to the site master, soon.
At the moment, I'm currently awaiting my 3rd ear surgery (first two were to try to fix the ear bones, which resulted in profound hearing loss in my left ear, after they both failed), to install a BAHA hearing aid to which a screw has to be surgically implanted into my skull, for the hearing aid to be attached to. I'm excited about it, because after hearing good reports on it from doctors and my audiologist, it would be able to make my hearing more "normal". At the moment, I'm wearing a headband-type bone conduction hearing aid, and it helps me hear better, but gives out a lot of static feedback, to which it makes it hard for me to understand anyone who's talking to me, even at my good ear.
In 1999, I began having trouble walking, which resulted in a lot of falling episodes, and it was then I started requiring the use of a wheelchair as my primary care doctor discovered that I had Congenital Hip Dysplasia and "moderate" scoliosis, which would later progress to almost severe. My mom purchased my first wheelchair, a Quickie 2 ultralightweight, as she knew that this was going to be a long-term kind of thing, and she didn't want to have to rent one.
I'm glad she did, because we had a hard time trying to get a doctor to help us with what was going on. We got sent to every hip specialist from Portland, OR; to Seattle, WA; to Eugene, OR; and finally, to the Mayo Clinic in Rochester, MN. My mom and I both really liked Mayo Clinic (we still do, to this day), especially the hip surgeon, Dr. Dan Berry, who we felt like we personally knew because he was from Corvallis, too. A Native Oregonian!!!! He waited a year before he wanted to do anything, and by the time he saw me the following year, on October 28th, he agreed to do a total hip replacement surgery, two days later. I spent one week at Rochester Methodist Hospital, on the orthopedic floor, and two weeks in the rehabilitation unit at St. Mary's Hospital (also a part of Mayo) for physical therapy.
I wasn't really able to walk after I had the hip surgery, as my right leg had "contracted" within a year, and made walking/weight-bearing on it, very hard. It wasn't until Botox injections were ordered, and also physical therapy was required. The physical therapist tried using an Ankle-Foot Orthosis on my right leg, to help keep my ankle straight, and to see if there would be any improvements, and as soon as he strapped it onto my leg, I took my first tentative steps with the aid of a Kaye reverse walker that he had, that I haven't taken in 2 years since the whole ordeal with the hip, began. He knew immediately what I needed, so he brought in a brace guy to fit me for a brace of my own, and brought in a wheelchair seating/mobility specialist, whose name was Tim Kelly (who I actually personally knew, because he was my Sunday School teacher at one time, and fitted me for my very first seating system, to be installed on my manual wheelchair) to fit me for my new Kaye walker.
The year before I got my new brace and walker, Tim fitted me for my very first "car", my Quickie S-525 power chair, with a candy-purple frame color (to which I picked out myself) special seating system in it, with all of the supports (posture chest strap, headrest, and a deep-contoured back), to help keep my back straight. He also ordered a wheelchair tray for it, for "extra" upper body support for my back, and to serve as a table for school, and when it was needed. My mom and I decided that a power chair was needed, because since our house is on top of a steep hill, she wanted me to have the chance to get out of the house and have access into town, especially in the summertime, and not be stuck in it all of the time. Of course, when a family member gets a new power chair, especially if it's a son/daughter, the parent would then have to invest in buying an adapted van for it. And that's exactly what my mom did.
Today, after a recent visit to Mayo Clinic last summer, just to see how my hip implant was doing, I got newly diagnosed with Dystonia. I also discovered that the hip dysplasia is back, in my left hip. It doesn't bother me too much, because after having undergone 45 surgeries (46, with the ear surgery coming up) in my lifetime, I've learned that dealing with chronic pain (especially if it's in your back, which is causing the most trouble for me), is no big deal. I'm glad for my power chair, glad for my manual wheelchair (which is the only one of the two wheelchairs that folds, as my power chair is HUGE and has a rigid frame) which we use for travel on an airplane (and because it's so light in weight, easy for my mom to lift in and out of her car), and my Kaye reverse walker (which gives me no back pain at all, and helps keep my posture straight when walking short distances/for short trips where taking my manual wheelchair wouldn't be necessary), and glad for my purple-print AFO (purple is my favorite color), which helps me walk, even though I limp a lot, with the way my back is.
I am my mother's "dependant" for medical insurance, because of my special healthcare needs, and the fact that her medical insurance cioverage allows us to travel to the Mayo Clinic in Minnesota every two years (in the past, to San Francisco, CA for craniofacial appointments and surgeries, as well as Toronto, Ontario, Canada when I was a baby and had my first skull surgery there), to see my hip and spine specialists, as well as other doctors when needed. I will never go on Medicaid/Medicare, or even SSI/SSDI. Even though I still have to be my mom's dependant, that hasn't stopped me from becoming engaged to a great guy named Dan, who developed Traumatic Brain Injury at 2 years old, and we're getting very excited about going through a "ceremony of commitment" next summer. I'm excited for that, because it means that I'll be "leaving the nest", and the last one out of my two brothers, to do so. I'm the only one in my "close family" with a disability, and the youngest of three. My two brothers are 40 and 43 years old.
People have told my mom how lucky she is, to have a special daughter like me, because after having me, all of the other children she had tried to have, she wound up losing either at birth/before birth. That, and when I was born, doctors kept encouraging her to have me placed in an institution because she told them that she wasn't sure if she wanted to deal with, what she's had to deal with, with me, in the last 25 years, and counting. Let alone, letting me live my life, like I am now. She told me once that she was glad it all turned out great, and that she wouldn't trade having me, for another daughter.
Samantha
