Holden’s Story by Lauren Weissberg
Meet “Team Weissberg” – Marc, Lauren, Reid, and Holden
When Holden was born, he was such a good baby. He didn’t wake up too often in the middle of the night for feedings, was quiet and content–the complete opposite of his big brother! We just assumed that after 2 years of not sleeping, we were finally being given a gift. We described Holden as being chill, with his serious demeanor and love for cuddling.
Although we were careful not to compare our two children, my husband and I could not help but notice that Holden was not reaching his developmental milestones. We were always open and honest with our pediatrician at the monthly visits, but our doctor never seemed concerned. As we approached his 1st birthday, the doctor did comment that Holden was not pulling to stand and recommended that we give him three more months before referring Holden for a PT evaluation. When Holden turned 15 months and could not crawl or pull to stand, we were given a referral for PT. Though we often wonder if we should have pursued an evaluation sooner, it seems that fate was on our side because a wonderful therapist was brought into Holden’s life.
In June 2015, at 17 months of age, Holden had his PT evaluation and we were told that he had hypotonia. What did that mean? We had no idea, but we were sure one hour a week of PT was going to fix it. But it didn’t. He could barely sit up without falling over. Holden’s therapist, Dr. Nicole, recommended that we call Early Intervention (EI) for an evaluation and we soon learned that Holden had global developmental delays and qualified for OT, PT, Speech, Vision, ABA, and Developmental Intervention. As parents with full time jobs, we wondered how we were going to integrate all of these therapies in to Holden’s life, but with the help of the fabulous owners and teachers in his daycare, we were able to work everything out–and the teachers even participate in the sessions! Holden spends many hours of his day working tirelessly to improve all of his skills.
Approximately three months before Holden’s second birthday, we learned that he had a chronic fluid problem in his ears and could possibly have hearing loss, so tubes were a must. Fortunately, all of the problems stemmed from the fluid and Holden had perfect hearing…but now had to learn to hear and communicate after 22 months of not being able to do so. We were getting a handle on the therapies, but still struggled to find answers.
Dr. Nicole, who we now refer to as the quarterback of our family, came to the rescue once again and recommended seeing a physiatrist and a neurologist. And thus began the scariest few months of our lives. Poking, prodding, MRIs of the brain–waiting with bated breath for phone calls from specialists with results. In December, we were told Holden’s MRI was clear…so, we assumed everything was fine and he just needed time to catch up. Our poor baby had been through so much in such a short period of time, but there’s no doubt this boy is a champion!
It was recommended that we see a geneticist–an appointment we would wait nearly 4 months for. We were not expecting anything to come up because the geneticist said it’s extremely rare that you find something in the first round of testing. At our February appointment, our neurologist diagnosed Holden with Cerebral Palsy. We tried to come to terms with what this would mean for Holden and our family. Needless to say, it was an emotional time for us. We pushed for as much therapy as we could get to give Holden the best possible chance. Holden was and continues to be the hardest working little nugget we know. He tries so hard in all of his therapies and truly has the heart of a champion. We can rest assured that no matter what happened; Holden was going to have a fighting chance.
Just as we were starting to accept the CP diagnosis and begin to move forward, our genetic testing results came in. While we waited for our appointment, the nurse told us, “Nothing life threatening was found, but we have an explanation for the low tone.”
On May 16, 2016, we learned that Holden had an isodicentric duplication of his 15th chromosome and was formally being diagnosed with Dup15q syndrome. How do you even begin to process something even your doctor knows nothing about?
On May 24, 2016, Holden underwent a round of Botox to loosen his muscles and improve his gait. This was followed by 6 weeks of serial casting, and then a new set of AFOs.
On November 3, 2016, Holden was diagnosed with Autism Spectrum Disorder, Sensory Processing Disorder, global developmental delay, and mixed expressive receptive language disorder.
On December 22, 2016, Holden was deemed eligible for special education services in our town under the “preschool child with a disability” category, and will begin a full day program on his 3rd birthday at the end of January. In February, we will venture to the Dup15q clinic in Boston and look forward to meeting Dr. Thibert and learning from him!
Holden attends daycare full time and has the most wonderful teachers who will miss him very much when he begins his new school at the end of this month. About 6 weeks ago, Holden started walking and he enjoys exploring his environment…on his own terms. He can most often be found in the kitchen trying—with much success—to remove the safety locks on the cabinets. When Holden isn’t at “work” (therapy), he enjoys watching Sesame Street, music (he just loves his music therapist Jammin’Jenn!), hanging out with his big brother Reid, and trying to sneak in to the bathroom to play in the toilet. Holden is also a champion cuddler and loves a good snuggle, which is why his nickname is “Snuggles” or “Snugs”. He also enjoys eating and will sign for “more” with much excitement whenever food is around! Although he a “chill” fella, Holden loves to be tickled and thinks it’s hilarious when we quack like a duck or fake sneeze and let a stuffed animal drop from our heads. Holden is a very big fan of the pool, even though he does more drinking than swimming 🙂
Holden is fiercely determined and surprises us every single day. We continue to hope and pray that he makes strides as he grows. As for Team Weissberg, we will be relentless in our pursuit to raise awareness about Dup15q and money for research, as we continue to believe that there will be a treatment for all of the Dup15q children some day in the not too distant future.