Alin's Site

May 15, 2010

About Me

Filed under: — Alin S @ 8:39 PM

I was born on August 8th 1991. Two or more weeks premature. I spent the first three and a half years of my life in a Romanian orphanage, on the third-year one of the caretakers attempted to kill me by throwing me down the stairs for complaining that she was stealing food. I suffered a Traumatic Brain Injury with skull fracture. I remember waking up in the hospital. Because of the premature birth and traumatic brain injury I am severely multiply disabled. I was transferred to a hospital in Bucharest for six months, after which I was transferred to an orphanage in Transylvanian Alps. There, I would stay until my adoptive parents brought me to America, to the Northwest suburbs of Illinois.

I came to America when I was approximately four years old. I had severe strabismus, and was only able to see from one eye, my adoptive parents took me to Dr. Middleman, one of the best Pediatric eye surgeons in the state of Illinois. It took three weeks for my eyes to heal, after which I started to learn to speak English.

My Mom and Dad introduced me to a loving family. Suddenly, I had two grandmothers, five Uncles, five Aunts, nieces and nephews and family I had never dreamed of before. Everyone wanted to get to know me and love me. It was a special gift coming to America; I would have died at an early age in Romania.

I started school, right away in September of that year I arrived, I went to a special program called ECDEC which stands for Early Childhood Developmental Enrichment Center, this special center allowed me to learn and adjust to the English language.

When grade school started my parents found out I had some sort of disability preventing me from learning normally. They put me in special education classes, and it seemed to fix things for a while. As time went on my parents took me to Advocate Lutheran General Hospital’s Yacktman Center for Pediatrics. We went to Dr. Nishawn Shaw of the Pediatric Neurology team who diagnosed me with PDD-NOS which is essentially Autism-Not Otherwise Specified. My Mom and Dad then worked with the school and the school district to get an IEP (Individual Education Program) for me. Now, my parents and the school district would have regular meetings to discuss progress and needs of my education.

I excelled in the computer classes; I found computer programs, and electronics to my special gift.

In sixth grade and discovered the Stock Market, I was intrigued by the buying and selling of stocks. I found learning programs on the internet to teach me about strategies in buying and selling, suddenly I wanted to change all my dreams from being a doctor to being a stock broker and investment tycoon. After a few months I discovered Options, Futures, Forex, Commodities, Bonds and other investment instruments. Over the next six years, I would become a genius of investments.

Immediately after graduating eighth grade the high school got me a work permit and I started working at a computer rental company where my mother worked as a sales representative. I worked as an I.T technician repairing and preparing computers and equipment for rental. I am knowledgeable in computer hardware, and I became the youngest I.T technician in the company. I knew more than most of the technicians who worked there. There was a server there which none of the other technicians could get repaired and running, and after four hours the owner of the company told me to try to fix it. In under 30 minutes, I had it fixed and running. I am a sponge with information. I research things and find out how things work and think about how to make them work for me. By the end of the summer, I found it progressively difficult to lift things, that I was lifting just two months earlier, something was wrong with my body.

Freshman year in high school was miserable for me. I fell walking in the woods and dislocated my knee cap, after physical therapy, and rehab, I discovered my muscles in my legs hurt always. I had pain in my spine, and it seemed that there was something wrong. Some days my legs hurt so bad I didn’t want to leave the house.

December of 2006 I my appetite was diminishing, I began losing weight rapidly, early February 2007 I weighed 97 pounds.

My parents took me to doctors, they took MRI’s, X-Rays and other tests, but didn’t find a cause. I was in pain always, but I was told that things would get better with vitamins and exercise.

My worsening condition forced us to completely pull me out of high school in March of 2007. I was put onto permanent medical leave until further notice.

In April we scheduled an emergency neurological assessment since my condition seemed to be getting worse, and I began having seizures, The neurologist scheduled us for a 24 hour ambulatory EEG where we brought the equipment home, and it was taking an EEG for 24 hours straight along with video at night, when the doctor saw the EEG result he could not make a diagnosis aside from seizures not otherwise specified. We waited another month and then went downtown to UIC to another neurologist who made another inconclusive diagnosis.

My case had become so complex that we were forced to find a new pediatrician to organize with Children’s Memorial Hospital. Dr. Corrie A. Harris, we saw her for the first time and she took a baseline evaluation. Two weeks after the baseline I had an upper respiratory infection, she took a look at me and said, “Oh no, you need to go to the hospital now!” She called Children’s Memorial Hospital Chicago and initiated a direct to floor admission process. Later that day we saw the neurologist who noticed I have severe kyphosis and scoliosis and sent me down for a series of spinal X-Rays which revealed that my kyphosis was at 80 degrees and my scoliosis was at 14 degrees. In February, my kyphosis was 40 degrees, and my scoliosis was 1 degree. The neurologist also did a standard neurological exam revealing several major neurological issues.

This prompted other tests. I was supposed to sleep until midnight and then stay up for 15 minute EEG recording, the EEG recording did not show any useful data to the doctors. After the EEG, recording I was taken to audiology for testing that revealed hearing loss at 8,000 Hz. Later I would have a blood drawing and urine sample taken. Both of which would yield results signaling neuromuscular disease.

The neurologist came in the room with a diagnosis; the diagnosis was neuromuscular degenerative disease NOS. She sent me down to get neck X-rays before I was discharged, they were taken on a 2 week old digital X-ray machine; the result came back as cervical instability, which put simply means that my spine in my neck is not stable and is more vulnerable.

So we came home, I felt very weak and my muscles in my legs hurt and it was very hard to walk; this is where my Mom ordered a wheelchair for me to get around. The school was furious and thought I was a faker. That there was no way a kid could deteriorate so fast. People suddenly thought I needed mental help.

A four hour IEP conference, between the district (about 15 teachers and the doctor of psychology and a physical therapist) The school thought that with attending the school and physical therapy would get me back to normal. This was so upsetting to my parents; they cried for help. The doctor bills piled up, hospital bills, and medications. Why would I fake something like this? I know I was talking about a powerchair and about getting around much easier and having the back of the chair molded to my back to stop the progression of the spine, but maybe I was obsessed with wanting to live and not wanting the pain anymore. It seemed me, my Mom and my Dad where on an island without help.

The news came that a powerchair would come in late January 2008. My Dad had to make the house accessible for a powerchair. A ramp would have to be built, furniture moved, and the house had to accommodate for me. My Dad built the Ramp in January in the dead of winter, outside in northern Illinois. (I love that man.) We also needed a vehicle to get around in with the powerchair. My Dad was picking me up and carrying me everywhere, and I felt sorry for him. My Dad is a big man, but there is no way for him to carry a four hundred pound powerchair. We found a great van with a lift already in it, my Dad sold his pickup truck to get just barely enough money to buy it, and modified it to fit my needs.

My Mom took me back to my original Pediatrician, and there they took me through more tests. A muscle biopsy was needed to check for diseases, but doctors were afraid that I would not recover from surgery because of my weakened condition. A g-tube was ordered, and surgery was marked for February 29th 2008. Advocate Lutheran General Children’s Hospital in Des Plaines, where the surgery took place I felt that maybe a diagnosis would be made other than neuromuscular degenerative disease NOS. The treatment I received was superior to Children’s Memorial Hospital in Chicago. The Doctors and nurses provided me with the best recovery. I met other specialists, they explained that with continuing tests they could possibly narrow the search for what this is. They ran a muscle biopsy from my abdominal muscles, which came back inconclusive. They would need to take another biopsy in the future.

We asked the school if we could do alternative schooling such as internet high school. They protested and denied our request; they told us that they had children in their schools that had months to live and were dying, why couldn’t our child go to school. My parents talked an advocate to fight for me. The school had given me a permanent medical leave. All I wanted was for the pain to stop, why can’t they understand that.

In May 2008, we were at emergency at Northwest Community Hospital, I began having a burning feeling when urinating. They took CAT scans, and x-rays Pediatric and thought I had a kidney stone, but released me because they couldn’t diagnose anything, but told me to go to a pediatric urologist, the earliest appointment would be 10 days later. By the weekend, I was puking up everything. We called Doctor Norman Segal, and we were told to go to Advocate Children’s Hospital In Des Plaines, IL for fluids. I was admitted after and entire day in the Emergency Room. They would run farther tests, to no avail they could not find the cause of what was happening to me. It wasn’t until we went to the pediatric urologist, and they read the x-rays and showed my bowel impacted and pressing on my bladder. After 3 days of suppositories, I started to feel better. But, it continued to burn intermittently when I urinated. We continue to suspect that there is something else wrong that they are not seeing. Why can’t these doctors find out what is going on!!! WHY???

In June of 2009 it was official that I have Classic Autism the white paper is always at

Beyond this in early 2009 They continued to run test after test on me. Finally in November 0f 2009 I had enough with pneumonia and respiratory infection and breathing problems, I electively got a Tracheostomy and was placed on a Ventilator to help, I breathe on my own through the tracheostomy quite often right now and my goal is to have it out soon. In December 0f, 2009 it was FINAL that I do not have a progressive disease and that I have Quadriplegic Spastic Cerebral Palsy.

Starting December 2009 we had in home nursing for about 5 months, and then we finally could not put up with it anymore. About in April we discovered I can crawl around the house on my own, so I crawl around and do all of my own medical tasks for myself. We then sometime in May got rid of the nursing. I have two ways of triggering emergency response, and always the third “cold” alarm. If I cannot speak but need to trigger a medical emergency internally within the house we have a “Code Blue” switch next to my bed that I can hit easily. If there is a medical emergency that is so critical that I need an ambulance or police RIGHT NOW and bypass everyone else I have a special switch pad connected to the alarm system wirelessly much like a car key thing. It automatically will signal for ambulance and police and fire response and sets off the loud 115 dB siren off in the house. Thankfully we have never had to use the second system, and usually everything goes through system 1, the “house” code switch. Both end up in an ambulance trip and or response but if I ever have to use the second system that means it is IMMEDIATELY life threatening.

In September of 2011 I was finally given a stable rock to stand on and shout to the world I WILL LIVE FOR A LONG TIME. I was diagnosed with Atypical Rett Syndrome and all question of progressive diseases have been ruled out. For more information about my Atypical Rett Syndrome click on the link here, It all happened on September 28th 2011!

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