Meet Eli & Zeke
Eli (11) & Zeke (5 months) are brothers navigating their own rare medical journeys, side-by-side.
Every purchase in January will help the family with expenses related to installing a wheelchair ramp for their home.
Eric and Daidra were married for eight years before growing their family. The couple was thrilled to learn that they were expecting twin boys. At a routine ultrasound, the doctor noticed some differences in one of the baby’s brains. The couple was referred to the hospital for more extensive ultrasounds which showed that the differences were within typical range.
Isaac and Eli were born in November of 2009 at almost 36 weeks. Eli weighed 6 lb. 6 oz and Isaac weighed 7 lb. 10 oz. Both boys did well after birth and stayed in the room with the new parents. Doctors kept a close eye on Eli because of the prenatal ultrasounds, but there was not an immediate need for the NICU.
The first indication of neurologic concern was when a lactation consultant noticed that Eli was holding his breath while trying to eat. He was quickly taken to the NICU where scans showed that his cerebellum and brain stem were smaller than average. Eli spent 35 days in the NICU before coming home.
During the first year of Eli’s life, he had a hard time eating, sleeping and was often crying. He experienced episodes in which he would get stuck in positions and had difficulty breathing. These episodes left Daidra and Eric often calling 911 and rushing to the hospital. Doctors did not know what was going on at the time but looking back it was most likely seizures and dystonia.
Eric and Daidra noticed some developmental delays and Eli started Early Intervention services at four months. A neurologist diagnosed Eli with Cerebral Palsy and a seizure disorder when he was about one year old.
At four years old, a swallow study revealed that Eli was silently aspirating. Doctors placed a G-tube in Eli for nutrition, meds and water. Although Eric and Daidra were nervous about it at the time, they now look at the G-tube as a wonderful blessing and the best thing for Eli.
Eli continued services with Early Intervention until he started preschool at 4 years old. He worked hard in physical therapy, occupational therapy and speech therapy. “All of the therapists throughout have been part of our lives and are wonderful people,” Daidra beams. Eli went to kindergarten and first grade at the local public school with this twin brother, Isaac. He then moved into the Finger Lakes BOCES program in the Newark school district. The program offered him an individualized education program with wonderful teachers, aides and nurses. The teachers knew Eli so well, including what his breathing, stares and little movements meant. “He’s very aware and you can tell in his eyes, when he makes eye contact, that he knows what’s going on,” Daidra shares of her son.
In the fall of 2018, Eli began to not feel well. His muscles were stiff, and he was crying and sweating. Doctors could not figure out the cause, so he was admitted to the hospital. A neurogeneticist suggested genetic testing. It was during this stay that he was diagnosed with PCH and dystonia, which is a movement disorder in which a person’s muscles contract uncontrollably.
Eli is now a happy 11-year-old in virtual middle school due to Covid. He continues to work toward feeling comfortable in his own skin through therapy. In physical therapy, he is working on range of motion and keeping his muscles limber. In occupational therapy, he is working on skills like sitting up and resting on an elbow. In speech therapy, he is working on communicating with his Tobii Dynavox, a communication device. Eli can communicate yes or no choices with eye gazes. It is a work in progress trying to coordinate the physical positions that allow Eli to use his communication device to express what he wants and how he feels. “It seems like his body doesn’t always allow him to be in the most comfortable position to access the Tobii. He has to be in his wheelchair where it is connected, so his eyes can pick it up,” Daidra explains.
Eli especially enjoys music therapy twice a month. He loves the vibrations of guitar, drums and singing. The family also uses massage therapy and heat therapy to help ease Eli’s discomfort from spastic muscles and a dislocated hip, which is not uncommon for kids with Cerebral Palsy. A massage therapist also comes to the house once a week to massage his tight muscles.
Eli has made encouraging progress in his ability to make eye contact and focus on people’s faces or what he’s looking at. He’s also made amazing progress with tracking. “If we walk to one side of the bed, he follows us with his eyes. If we come in and start talking to him, he lifts his head or turn his head to us like he wants to engage in conversation,” Daidra explains proudly.
Eli has a strong connection with his brothers. Eli is starting to show interest in the shows that his twin brother watches. He loves things with bright colors and music. When they put 6-month-old brother, Zeke, in Eli’s arms, he seems to have purposeful movements. “His arms are pretty spastic, and he can’t really do a lot purposefully with them, like hold a toy or flip through a book. But as soon as we lay Zeke on him, his arms just wrap around him like he knows that he has to support him,” Daidra shares about her boys. “It’s almost like therapy. You put him there and he’s like I know what I need to do. I need to organize myself around his body and it’s really cool.”
Daidra and Eric thought their family was complete, until they were surprised to learn they were expecting another boy. At a routine ultrasound about halfway through Daidra’s pregnancy, doctors found a mass on the baby’s cheek and neck. After a few extensive ultrasounds, they found that it was a lymphatic malformation or a lymphangioma, which is a mass filled with fluid. It was not cancerous, but they were not sure if it would affect the baby’s breathing. Daidra and Eric watched their baby grow through ultrasound pictures and made a birth plan through telehealth with the care team, including a pediatric surgeon and an ENT. The couple was prepared and excited to meet their son.
Zeke was born via scheduled c-section in June of 2020. “There were about 20 to 25 people in the delivery room just waiting to see what was going to happen. They didn’t know if he was going to need a breathing tube or if he was going to need a trach at birth or if he was going to breathe on his own,” Daidra explains. Daidra and Eric were grateful that the team was so well prepared. It turned out that no one was needed. “He was fine. He was breathing. You could see the mass on the side of his face, but he was just perfectly fine,” Daidra recalled. Zeke went to the NICU for observation but was discharged with Daidra and Eric after four days.
They left the hospital thankful and relieved that everything was going well. The plan was to treat the mass through sclerotherapy in about six months. The goal of sclerotherapy is to shrink the mass by draining the fluid with needles and injecting medicine so the fluid doesn’t return.
The family went on to enjoy a summer of family time. A couple days before Zeke turned three months old, Daidra and Eric noticed that his face looked swollen. By the next morning, it had almost doubled in size and he was very agitated. Daidra took him to the pediatrician and they said to just keep an eye on it because it didn’t seem like there was anything else wrong. The following morning, Daidra took him back to the pediatrician because the swelling was not getting better. Zeke wasn’t eating and he was agitated and crying. They were sent to the ER and were admitted to the hospital. They spent one night on the main floor and then went to the PICU for 51 days.
In the PICU, doctors discovered internal bleeding within the mass which was causing the swelling and serious concern about Zeke’s airway. The plan was to intubate Zeke temporarily, treat the mass with sclerotherapy and extubate him.
The hospital stay did not go as planned. Zeke’s airway became more and more critical because of the swollen mass. He was put on a paralytic because doctors did not want him to move and jeopardize the tube or his airway. “He didn’t move. He didn’t wake up and we couldn’t hold him for almost a month, and it was heartbreaking. The only thing we could hold on to was God and the hope that this was all going to end, and that we could take him home,” Daidra recalled.
After 28 days, doctors tried to extubate Zeke. When they removed the breathing tube, Zeke’s airway unexpectedly collapsed. Doctors put the breathing tube back in and told Eric and Daidra that the only thing left to do is a tracheotomy. “We were very heartbroken because we had already side stepped a trach at birth.” Daidra shares. The couple clung to their faith to get through this difficult part of their journey.
While Zeke was in the hospital, a radiologist performed three rounds of sclerotherapy to drain fluid out of the mass to reduce the size. Eric and Daidra also consulted with a hematology oncology group. Zeke’s mass is not cancerous but they recommended a medication that has worked in other cases to shrink vascular malformations. He also began weaning the paralytic, sedatives and pain medication.
Zeke came home after spending 51 days in the hospital, but he was acting differently. After about three weeks, Daidra said, “I think we need to bring him back to the hospital. He’s not living a good life. He’s crying all the time. We can’t put him down. He’s not keeping his food down. He’s starting to lose weight. I don’t understand. We thought it’d be better at home. It just seemed like it was worse than in the hospital.”
They went back to the hospital in the beginning of December of 2020. He had an MRI which showed that the agitation was neurologic. Zeke was diagnosed with Pontocerebellar Hypoplasia, a condition in which his brainstem and cerebellum are smaller than average.
Zeke currently eats through an NG-tube because his trach has made it difficult for him to coordinate suck, swallow and breathe. Daidra and Eric continue to help him relearn how to suck so he can return to oral feeding.
Today, Zeke is a strong, sweet, cuddly 6-month-old who loves being sung to. His medical journey is still unfolding as doctors continue to put the pieces together. A recent MRI has shown that Zeke’s brain is similar to Eli’s. The family is still processing what this new finding means for Zeke.
The family’s days might be filled with meds, tube feedings, therapies, vest treatments, but their days are also filled with love, smiles, and gratitude. It has not been an easy road, but the family chooses to walk their journey in truth with hope and faith in uncertainty.
Time to get loud shouters!
Throughout the month of January we will be shouting love for Eli and Zeke!
So click here to shop now where every purchase in January will help with expenses related to installing a wheelchair ramp for the family’s home. To help support kiddo like Eli and Zeke every month, click here to start a monthly subscription.