1 in 762 people are born with Down syndrome and there are approximately 6,000 people with Down syndrome in greater Houston. Children and adults alike with Down syndrome are benefiting from our ECI, Caroline School, playgroups, BridgingApps, Adult Program and more. Here is just an example of one of our many success stories!
Adri’s journey continued on a smooth path as she made steady progress, gaining independence in all areas of development. She was eating a larger variety of foods (also receiving additional nutrition through her G-button), began walking independently, and using more words and phrases to communicate. At 3 years old, Adri graduated from the Easter Seals ECI (Early Childhood Intervention) program, and transitioned easily into the PPCD (Preschool Program for Children with Disabilities) class with her local school district.
As most journeys hit challenges along the way, Adri’s journey took a terrifying turn. In January 2018, Adri became very ill. Her parents made two trips to the hospital ER one weekend, where she was diagnosed with “just a stomach virus”. Her health did not improve. When at her pediatrician’s office on Monday, Adri’s left arm began jerking. Suspecting she was having seizures, Adri was transported by ambulance, for her third trip to the ER. After given numerous tests, and losing the ability to lift her left arm, Adri was taken, by ambulance, to UTMB. The EEG and MRI indicated no seizures, but her fever continued, and her condition worsened. Since no neurologist was on-site, Texas Children’s Hospital sent their ambulance to pick her up. Adri was intubated before she left in that ambulance. Once she arrived at Texas Children’s, Adri was taken straight to the ICU.
After multiple tests, on January 25th, the test results showed Adri had Adenol virus which “mimics” the flu. Children with Down Syndrome may have weakened immune systems, and Adri became susceptible to the virus. The Adenol virus triggered Moya Moya, a common, though not frequent, underlying condition sometimes present with Down Syndrome. Moya Moya caused progressing restricted blood flow to the brain, depriving certain areas of the brain of oxygen and glucose. The MRA and MRB tests revealed Adri suffered a massive stroke to the right side of her brain. Adri lost the use of her left side of her body – she was unable to use her left leg, left arm, and left hand. Her speech was also affected. Adri began rehab therapy, to regain strength, and use of the left side of her body. During her month-long stay at Texas Children’s Hospital, Adri also had brain surgery on February 19th. The neurosurgeon tried to create new blood vessels on the right side of her brain. Her parents endured this traumatic time through their faith, and support from family and friends. As her mom stated, “We had a lot of people praying for her.” Adri was discharged on March 8th. In order to regain her strength, and focus on recovery from her stroke, Adri stayed home from school and began receiving out-patient therapy. She had OT (Occupational Therapy) and Speech Therapy two times per week, and PT (Physical Therapy) one time per week.
Last August, with the start of a new school year, Adri began the next phase of her journey. Today, she walks independently again (with a slight drag of her left foot), feeds herself a variety of food (still receiving additional nutrition from her G-button with 4 feedings a day), uses 3-4 word sentences to communicate what she wants, uses her left hand as a “helper hand”, and knows her letters, most shapes and colors, and counts to 20. Her dad commented Adri has had a strong will, even from birth, and is “feisty”, which helped her recover. She has surprised her therapists with how well she is doing. Adri attends PPCD Monday through Friday from 8:25-11:55 am, and receives out-patient therapy two times per week. Mom reported Adri loves riding the bus home from school, and enjoys “tooting the horn” to let mom know she’s home. Adri loves to sing, dance, and watch YouTube videos. Her mom added she’s “very funny”. Adri has fun with hats, dressing up, and looking in the mirror. She comes up with new words and sentences every day. Adri greets people, says what she wants, and still gives amazing hugs! On her last brain angiogram in the Fall of 2018, the neurosurgeon stated the brain image now shows “no stroke”, and the medical team can’t explain it.
When requested to look back where their journey began, Adri’s dad reflected on their family’s time with the Easter Seals Infant / ECI program:
To really come home with a child with Down syndrome….well, one of the most unexpected things in our lives. We all cried. To receive help from Easter Seals Infant Program was great! Really was a tremendous help. At first, we thought we were all alone with this. The ECI staff became like family. They didn’t just do their sessions. They listened to what we needed. Therapists recommended what Adri needed, then helped us resource it. We really miss them. They were a big time help with her progress and almost entirely the reason Adri was school-ready for PPCD.
Adri’s dad said he wanted to offer this advice to parents of children with Down syndrome: “Pack your patience. Really take time to get to know your child.” That is sound advice for parents of all children. Adri’s parents’ high expectations for Adri have enabled her to progress in her development, recover from a massive stroke, and look forward to the next steps of her continuing journey.
Sharon Mott, EIS/Transition and Outreach Coordinator, Easter Seals Greater Houston