Wonderful story
This is a very touching, but long story. One well worth reading!
The story of T & T Kasper.
Our story begins with the birth of our first child, Treven. Yes, it is an unusual name and it fits him to a “T”, it is a combination of Trevor and Devin and in my quest to find the perfect name, I uttered the two together and when the result came out of my mouth, my husband and I both thought “perfect!” But, Treven was not perfect. From the day he was born, he was extremely ill. He would vomit everything that he ate, including breast milk, and he cried uncontrollably all night. I had to take six months off work due to the lack of sleep and I remember that when I went back, the most that Treven had slept in succession was 45 minutes.
Treven went to the doctor every week. He had an ear infection every two weeks, because he would be put on antibiotics for 10 days and then 4 days later, he would get another infection. He had countless bouts with pneumonia and diarrhea and the vomiting would not stop. I told the doctor repeatedly, “something is wrong with my baby” but I was sent home each time with Amoxicillin (the pink medicine) and was told that everything would be all right. I told myself that I was just an overprotective mother and that he would get better soon and all would be well. This type of thinking ended, one summer night when my wildest fears were realized.
I went to bed tired, for the millionth time, knowing that in about an hour, I would be up. Treven was 20 months old and things had not gotten any better. I lay there with the buzz of the baby monitor ringing in my ears and I was just about to fall asleep when I heard a tiny groan, then silence. SILENCE, I thought, this was great! I could finally get some sleep, but there was something wrong with this silence. I resisted my initial urge to get out of bed for a second, but then I found myself wandering, bleary-eyed down the hallway to Treven’s room. “I’ll just check on him really fast,” I thought. When I got to the crib, I screamed. This scream woke my husband from a sound sleep and he came running in to the room. Treven was blue and not breathing. I scooped him up, relied on my CPR training, and began breathing for him. My husband took over and we ran for the door. We were close to the hospital and knew we could get him there quicker than an ambulance. We ran through the hospital doors carrying our baby, who was barely breathing and without any discussion, the staff ran us back to the emergency room and began working on him. Just then, he coded, as we watched the doctors pump his little chest and try to revive him. They pushed us out of the room and I remember fighting to stay. I found myself standing in the hallway, behind locked doors, wearing only one shoe, my underpants and a shirt. We waited. The doctor came in with a grim look on her face. She said Treven was in extremely grave condition and was being kept alive by life support but this hospital did not have the right level of care for him and he was too fragile to be transported. After about an hour, we were told that he would have to be moved or he would not survive. They called a helicopter to take my baby away and I watched as they wheeled a gurney past us. All I could see was tubes and wires. They stopped briefly, pulling the blanket back, exposing his tiny forehead. We kissed him and walked with him to the helicopter. As my husband tried to get in, they told us there was no room. The life support machine took up the only extra space and we could not go with him. I still remember the pain as I watched the helicopter fly away.
Treven was on life support for a week. They tried several times to get him off the ventilator and it was several weeks before he finally came home. He was now almost two years old, but he was an infant again. We had to raise him all over again. He had to learn how to walk, talk and eat again. Despite this, he bounced back quickly and within two months, he was almost too where he was before. Then, it happened again. This time, we were ready and knew what to do. This time, he was only on life support for four days. This time, would be the last time.
I fired our pediatrician and did tireless research on the internet. We found an immunologist who told us that our son had a rare pediatric immune deficiency. He was like the boy in that movie, “The boy in the plastic bubble.” There are three types of antibodies in the system and only a trace of Treven’s antibodies was present. What was there, did not work. He was started on IV therapy right away and every three weeks, we had to bring him in for peripheral IV therapy. Have you ever had to hold a 2 and half year old down for a shot? Try holding him down for the IV and then making him sit still for 3 hours while medicine that makes him feel ill is pumped into his veins. I still hear his screams. Treven’s doctor told us that he would probably need the infusions for the rest of his life. He told us stories of other kids and how they arranged to get out of school and make up their work later. Their life was surrounded by doctor visits, blood work, hospital stays and medicine. Each time we visited, I outlined the latest hospital stay and the most recent surgery. Just when we thought things could not possibly get any worse, we visited a specialist who told us that we should not have any more children. My husband and I each shared a recessive gene that we inherited from our fathers, who are both of Mediterranean descent. The gene effects the blood, specifically the “T-cells” that related to the immune system. If we had any more children, it would only get worse. A month later, I found out that I was pregnant.
This was going to be a bad pregnancy. My doctor told me to prepare for the worst. Only eight days after finding out that I was barely pregnant, I started to hemorrhage. I had an implant of tributaline and when that did not help, I was hospitalized on and off at 16 weeks pregnant. I got out long enough to be present when doctors did surgery on Treven to implant a portable catheter into his chest so that his infusions would go smoother. Most of his veins were blown and we really had no choice. At 23 weeks pregnant, I was hospitalized for good and our second child, Tresten, came into the word, weighing just two pounds, when I was 27 weeks pregnant. They said he would not survive.
For months, we held a bedside vigil and twice we were told to get to the hospital quickly because Tresten was dying. I sat there watching the blinking lights and hearing the tone that he had stopped breathing go off again and again. CODE RED! rang out yet again and a swarm of doctors worked on our tiny infant. He had an IV in his head, one in each arm and even in his feet. He was on an oscillating ventilator and his lungs were not maturing. Tresten caught the flu, RSV, SARS and even a bad case of E-Coli bacteria. He developed bleeding on the brain and we were told that he would probably be mentally retarded, blind and maybe deaf. Out of the 25 babies in our pod, only 8 made it out alive and ours was fortunately one of the lucky ones. But “lucky” had many different connotations. Out of the eight, two had severe Downs Syndrome, one was blind, one was deaf, one was paralyzed and tragically, one died at 8 months old. That left Tresten and one other little boy.
Tresten was sick from the time we brought him home. He could not eat; he was on oxygen and a heart monitor. Regularly, he would stop breathing and I kept remembering the time I found his brother in his crib. By the time Tresten was a year old, he was not walking or talking and he still could not eat solid foods.
We visited several doctors who gave us grim news. Tresten’s lungs were functioning so poorly that he may not survive. The pulmonary specialist always had a grim look on his face and told us that there was very little he could do for Tresten. We had a breathing machine, two inhalers, a rescue inhaler, liquid steroids, allergy medicine and countless antibiotics. Our pediatrician pointed out that Tresten had a limp and swung only one arm when he walked, “a mild case of Cerebral Palsy”, he said. Next came the gastroenterologist with more bad news and more medicine. If this were not bad enough, the neurologist visit was absolutely devastating. His words still ring in my ears
”Tresten is autistic and suffers from severe mental retardation.” He went on to tell me that my son would never be normal, would never hold down a job, would need to go to a special school and would never develop social skills. He told me to start thinking about my options and where I might place my son for care. I was furious! This was not happening. I thought about all the things a mother wants for her child. To have a happy childhood, go to school, hit puberty, go to the prom, college, marriage, babies, the works! I was numb when the doctor handed me a referral for a developmental pediatrician, one who specialized in autistic children. I made the appointment thinking that there had to be some terrible mistake. In 2005, one of the most renowned centers for Autism gave me the same diagnosis. They mentioned everything I already knew. Tresten could not talk, he was barely walking, avoiding eye contact, throwing tantrums, displaying aggressive behavior and he had a fixation with routine. The words read, “The above findings were furthered reiterated using the Childhood Autism Rating Scale in which Tresten attained a total score of 39, placing him in the severely autistic category of the autistic disorder.”
Four months later, I found mangosteen.
I remember my friend, Deborah, telling me about this fruit. She said when she heard about it, she immediately thought of the boys and me. She sat me down and gave me the information and we talked for about an hour. I went to my first mangosteen meeting and I heard Tommy and Carolyn talk. I also met Dr. DeGuzman and Dr. Templeman. I was skeptical at first, but I had done tireless research on the Internet and tried all kinds of natural therapy and knew that I had to give it a try. We began in June with me giving Tresten one ounce of mangosteen juice daily and Treven receiving two ounces daily. After speaking with Dr. Templeman, I increased this to two ounces daily for Tresten and four ounces daily for Treven.
After 10 weeks of drinking mangosteen juice, I began to notice that Tresten was developing speech. Before mangosteen, he had a vocabulary of about 20 words, which were very difficult to understand and he was not speaking in any sentences. Even his speech therapist, who came to our house noticed the difference and told me to keep on doing whatever it was that I was doing because it was working. Tresten got better and better and I happily relayed each new word or word strings to my friend Deborah. I had never heard my little boy speak and now he was finally being heard. About 4 weeks later, I called Deborah and could barely speak through the tears. I blurted out, He said “I Love You.” I know I heard it! It was late, dark, and I put the phone to his little ear and encouraged him.
“I uvv ewe” squeaked out. Deborah heard it too. It was not perfect, but it was real. My son was two and half years old and I had never heard him say I Love You, or any other such phrase. This was the beginning for us.
It is now one year later. Tresten is in pre-school and during his evaluation, the developmental pediatrician states that he no longer presents as autistic. He is performing at or ABOVE the level of typical 3 year olds and has a sunny, contagious personality. He is a chatterbox and sings and tells stories. Tresten’s lungs are nearly normal. For the first time in 3 years, I saw the lung doctor smile. Tresten’s breathing machine is collecting dust in the cabinet and we are down to only one inhaler. The doctor wanted to stop all of his medicines completely, but I still held on to one Flovent inhaler and a digestive pill. I mean, lets not get too crazy! Tresten eats like a champion and will consume whatever I put in front of him with zeal. Yes, moms, even if it is green, red, mushy or chunky, he eats it! He is on the chart for weight and height and walks and runs with no signs of impairment.
This was supposed to be a terrible summer for Treven. He was to receive an infusion right after he finished Kindergarten, then we were to wait four weeks and they would do a blood draw. He was then going to get a Pneumococcal injection and then more blood draws to follow. The doctor ordered his blood test early because he was doing well and what a blessing it was! Treven was just declared the 5th person treated by our immunologist to ever develop an immune system after the fact. His blood work came back so good that they ran it again; they could not believe that it was from the same person. Treven has come off his antibody infusions and if all goes well, doctors will remove his catheter at the end of the year. Treven started first grade this year and he attended summer camp for the first time in his life, which is WAY more fun than getting blood drawn! Treven is down to only taking one pill a day for digestive purposes and his doctor tells us that they will phase out this pill within the year. For the first time ever, Treven will be off all medicine.
Our family traveled to Disneyland this summer. For the first time in their lives, our kids were both clear to travel to a public place. They had a great time and did not get sick. We have big plans for our boys, thanks to mangosteen. I look forward to baseball games, skinned knees, guitar lessons, pimples, puberty and even the teenager years with delight!
I cannot tell you what mangosteen juice has done for our lives in simple words. I guess
“I Uvv Ewe Mangosteen” would be a good start!
Leah Kasper, proud mom of Treven and Tresten, (T&T) and faithful Mangosteen juice drinker.
posted by tarynmaeve @ 9:59 AM
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