A.J., my son, is a living testimony. On August 1, 2004 at 11:39 a.m., this little miracle, Arthur D. Alexander III, was prematurely born at 28 weeks in North Kansas City Hospital. He was 13 1/4 inches in length and weighed 2 lbs and 1 oz. Because he was extremely premature, the Children’s Mercy Trauma team was on site to stabilize him after delivery. The trauma doctor came to us with very disheartening news, “Your baby is in grave condition. He may not live for the next hour. He may not live through the night; but we will do everything in our power to keep him alive.” An hour had passed and A.J. was still fighting to stay alive and we were only allowed see him for a few seconds. Thankfully, I was able to lightly touch and kiss his forehead before they closed the isolate and immediately transported him by ambulance to CMH-Neonatal Intensive Care Unit. A.J.’s dad and Grandpa Jones closely followed by car.
Early the next morning, I was discharged from the hospital and anxious to see my baby. In a few hours, we were at his bedside yet overwhelmed by the sight of all of the beeping and flashing monitors which filled up his room. There were so many tubes and wires attached to his small, delicate body. His team of doctors explained to me that A.J. was diagnosed with congenital heart condition, respiratory distress syndrome, chronic lung disease, premature grade 1 retinopathy, large supra-umbilical hernia, bilateral inguinal hernias, level 2 brain hemorrhage, anemia, hypothyroidism, jaundice and cerebral palsy. He would need surgery to repair the heart defect so they could thoroughly treat his undeveloped lungs.
Just two weeks after A.J. was born, we received some good news. We all, including the doctors, were amazed that his heart defect had completely disappeared. To confirm, they took several echoes of his heart and compared them to the original x-ray. They could not find the defect. They told us it was a “MIRACLE” because as they mentioned before, the condition would not correct itself without surgery.
A.J. remains in the NICU under bright lights to remove the jaundice from his body. For 45 days, he was on a breathing tube, 15 days on the C-Pap and received numerous blood transfusions. Finally, the bleed in his brain clotted. At that point, he was able to receive oxygen through a nasal canula.
On November 2, 2004, A.J. is 94 days old. Finally, they discharged him from CMH with oxygen, a feeding tube, five different medications and a notebook full of instructions on how to care for him. We began our first year together. Grandma and Grandpa Jones took care of him during the day and A.J. began receiving in-home Physical and Occupational services through the Missouri First Steps program.
Two years had passed and A.J. routinely attended Children’s TLC where he received PT, OT, speech and special instruction. At this time, he struggled to meet many of his Individualized Educational Program goals. Upon completing a series of developmental tests at CMH, the doctor informed us that his learning pace was consistent with severe mental retardation – another barrier. After digesting this news, we requested extensive blood testing for A.J. The results indicated A.J. had a very rare genetic disorder, Subtelomeric, caused by the deletion of the long arm of the 10th chromosome. These findings along with the bleed in his brain were big contributors to his developmental delays.
After A.J. turned three, he started his journey at Northland Early Education Center and Early Childhood Special Education. He had delays in fine motor/sensory, feeding, non-verbal communication, gross motor and social skills. He was at the beginning stages of crawling. Six months later, I took A.J. back to the CMH for another evaluation. The test confirmed our suspicions; A.J. received a diagnosis on the Autism Spectrum with Pervasive Development Disorder – Not Otherwise Specified or PDD-NOS.
After, A.J. turned four; he started meeting the majority of his 2009 IEP goals! A.J. moved from his “special” chair that kept him from leaning or falling forward to a regular chair. He is now able to cruise around in the Blue Room and he has learned sign language to communicate with his family, teachers and friends. His rocker bottom clubfeet are now strong enough to allow him to walk down the hallway with his “crocodile” walker and have fun on the playground with his friends. We appreciate the teachers and staff at NEEC for all that they do for A.J. Everyone is always so friendly, helpful, encouraging and supportive of our family and A.J.’s challenges. We are thankful to NEEC for teaching compassion for diversity to children. Thanks again for being a part of our journey of HOPE!
“She’ll just need a little occupational therapy.”
Those words, said by a nurse minutes after our daughter was born in June 2012, were the first real indication we had that all was not well with our sweet Sylvia.
The nurse spoke nonchalantly, showing us how Sylvia’s wrists flexed awkwardly to the side. But I saw the grim looks passed between the nurses while none made eye contact with us. We spent the next hour snuggling our new baby girl while I tried to push down the fears that something was really wrong.
Sylvia went to the nursery for her bath while I was transferred from L&D. Later, two nurses from NICU carried her back to us and explained that Sylvia had several markers indicating a genetic anomaly.
Sylvia spent nine days in the NICU. Before she was discharged, her genetic testing came back with no answers, and our adventures in the world of “Undiagnosed” began. Shortly after we settled home, the marathon of specialist appointments commenced. To date, Sylvia is being followed by orthopedics, ENT, neurology, audiology, ophthalmology, immunology, genetics, pulmonology, cardiology, developmental peds, gastroenterology, plastic surgery, and the cleft palate clinic.
When she was five weeks old, she had her first surgery. Then began monthly hospitalizations for chronic pneumonia. At seven months old, a g-tube and fundoplication were placed because our tiny, already underweight baby was losing ounces. Developmental milestones were being missed despite early intervention services.
We recognized we needed to move from our home in Springfield, Missouri to the KC Northland in order to be closer to our families and a children’s hospital. In November of 2013, after hearing high praises from multiple sources, we enrolled Sylvia at the Northland Early Education Center.
Our decision to send Sylvia to the NEEC turned out to be one of the best we have made. She receives physical therapy, occupation therapy, speech therapy, and special instruction from the early interventionists. A teacher from the CCVI comes to work with her as well. We cannot sing the praises of Sylvia’s therapy team loud enough. She has flourished under their guidance. It is obvious that helping children in development is more than just a job for each of these women. They truly care about our daughter and she absolutely adores them. It is remarkable how seamlessly they work together in their treatment of Sylvia.
We are also continuously impressed by the sense of community at the NEEC. In the mornings when Sylvia arrives, each staff member we see says good morning to her and calls her by name. When she was just beginning to walk on her own, there were teachers cheering her on from every room as she made the long trek down the hall to the yellow room. Sylvia’s needs have been varied and plentiful, but they are always met with care and concern.
Sylvia is a spirited and happy girl. Pizza is her favorite food, and she can now use a fork to eat. She no longer needs her feeding tube. Her favorite pastime is looking at picture cards or books. Just recently, she has begun saying a few words and using some signs to communicate. She loves music and singing, especially The Wheels on The Bus. She can walk where she wants to go, and is becoming better at moving her body all the time. She is beginning to enjoy pretend play, so the animal toys at our house are always roaring. What a delight it is to watch her grow and learn!
Sylvia has taught us many lessons. Perhaps the most important is mindfulness. Our lives are not at all what we envisioned when we decided to have a child. What lies in her future is a mystery yet to unfold. There is certainty in the now, though. Right now, we have a beautiful girl who brings us indescribable joy. We treasure every moment with our Sylvia.
My water broke when I was 33 weeks along, after teaching the first week back from summer break. After two days of steroids to develop her lungs a little more she showed up with a head full of caramel red hair. She seemed perfect! She had a small hole in her heart that the doctors were sure would close up on its own. We hung out in the NICU for 13 days while she gained weight and learned to eat on her own. We got her home and she gained weight and blessed us each and every day. We could not get her into the childcare facility we had chosen because she was two months early. It seemed to be an answer to our prayers when we found an in-home daycare that in that moment just felt right. Gwen was an easy baby who was sleeping through the night at six-months-old. Her lungs were highly susceptible to allergies and anything such as a cold almost always turned into bronchitis or pneumonia, but we were doing great despite.
Then the worst day of our lives happened when she was 14-months-old. I received a call from the in-home daycare that I needed to get to the house because Gwen had fallen and was not acting right. I drove faster than legally allowed. When I got in the house, my perfect angel was completely lifeless and unconscious. At the hospital, I learned that someone in that house had violently shaken and shoved my princess. She had a subdural hematoma (a bleed between the two halves of the brain) and retinal hemorrhaging (the blood vessels of her eyes had burst). These two things combined ONLY happen when shaken baby syndrome has occurred. Legally, I was not able to have any contact with her and the police department began their investigation of this woman, her home, and the people in her life.
We came home again from the single most horrific event anyone can ever suffer through. We were told at the many doctor’s appointments that followed that her eyes were going to be fine, but it could be weeks, months, or years before we saw any of the effects of the traumatic brain injury. Gwendolyn seemed to be on track with her development until the expectations on her social skills came into play.
We struggled through several more daycare centers until we were given one of the greatest gifts ever, Northland Early Education Center. When we got there it was no longer, “Gwendolyn is a horrible child” or “Gwendolyn is a severe behavior problem”. We were now hearing things explained to us about her daily experiences and we were learning terms that meant something and we were being given the language to explain things to a specialist. This is exactly what Gwendolyn and her dad and I needed. We saw a developmental specialist who diagnosed Gwendolyn with Autism Spectrum Disorder (Asperger’s Syndrome) and early ADHD. The Blue Room teachers in the three-to-five year old classroom began to work with her with this new knowledge and they assisted us in getting her into Early Childhood Special Education through the North Kansas City School District. How amazing it was to see Gwen get on a bus each day at NEEC and go to her classes. We saw immediate changes for the better. The knowing gave us power. Gwendolyn learned differently and saw the world from a different perspective. Gwendolyn graduated from the Blue Room and began Kindergarten just as she was turning six-years-old. Her Individualized Education Plan (IEP) was in place and she was actually in school with several friends from her class at NEEC. It took two months of school and struggling before she was formally diagnosed with ADHD. She began medication and it wasn’t two weeks before everyone was seeing very positive differences. At her last IEP meeting we have learned that Gwendolyn is flourishing in school and learning at such a rapid pace they are referring her for SAGE (gifted education). She is an extremely happy child and she can light up a room. The thought of never having NEEC in our lives is scary. This very special place will forever be in our hearts and we are forever in their debt.