October 3rd, 2018 started off like most days for our little family of three (Kelly & Todd, and big sister Jayla) as we eagerly awaited the arrival of our twin babies in a couple months. We had no idea a huge surprise was in store for us. By the end of a chaotic day we were welcoming Brinley and her twin brother, Wesley, into the world. They were delivered premature at 32 weeks, 6 days which was completely unexpected and a bit frightening. Luckily, Brinley & Wesley were doing just fine after delivery and we began mentally preparing for an extended stay in the NICU until they both passed key developmental milestones. We were so excited about our newest little additions to our family but we also knew the road ahead in the NICU would be tough. In reality, we hadn’t the slightest idea of the challenges to come.
The extended NICU stay probably wound up being a bit of a blessing in disguise since we had help from an amazing staff of NICU nurses. Brinley had feeding issues due to suck/ swallow struggles from day one, which wasn’t completely unexpected, but she showed very little improvement over the coming days and weeks while her twin brother excelled. While feeding Brinley wasn’t a fast or easy process, she would eventually finish her bottles (or at least most of them) with the guidance and support of the NICU nurses. Wesley never had feeding issues and he continued to thrive so he was able to come home from the NICU after a little more than two weeks. Brinley’s stay wound up being longer due to her struggles so she came home just in time for Halloween at exactly four weeks old.
We were relieved to finally have our family home but things only got harder and harder for us. Brinley continued to have significant challenges eating as she would often choke and cry while attempting to drink her bottle. We saw a GI Doctor early on who confirmed Brinley was struggling with suck/swallow coordination which was often causing her to aspirate. At the recommendation of the GI doctor we started meticulously tracking her calorie intake to ensure she was eating enough. We added extra calories to her bottles by mixing in oatmeal cereal and doubling up on formula powder. We also added powder thickener to help prevent aspiration. It took a ton of effort but we were able to keep her on a decent growth track while her ability to take her bottle showed some improvement.
During these first challenging weeks at home Kelly had the first inklings, the mother’s intuition so many of the Ogden Moms mention, that something was wrong with our sweet little Brinley. I wouldn’t admit it at the time but I also noticed a lack of eye contact and tracking of objects which concerned me. We hoped and prayed she just needed more time than usual because she was a premie. The most pressing matter was just ensuring both of our babies were eating, sleeping and growing which is no easy task with twins. We were in survival mode.
At about three months old, we introduced Brinley to eating purees by adding formula to mashed avocados and soft boiled eggs to help increase her calorie intake while at the same time reducing her reliance on bottles which she still struggled to drink. She immediately loved food and we quickly realized her eating improved when the consistency was thicker. Eating soft solids became a complete game changer as she quickly began to gain weight. To this day, she’s the best eater of our three children. Meal time is messy and she’s still learning to use utensils but she loves pretty much any type of food.
As the first few months continued to pass by, Brinley was clearly missing developmental milestones while Wesley went from one to the next. At about four months old, Brinley started physical therapy because her limbs were unusually stiff. It was to the point where she could barely reach out in front of her and she constantly kept her hands in tight fists. We later discovered this was due to hypertonia in her muscles. For months we sought out specialist after specialist in an attempt to figure out the cause of her struggles but we didn’t really get solid answers beyond the generic “developmental delays due to premature birth” explanation. We almost wished we could accept that answer but we knew there was something more and kept searching for concrete answers.
Finally, we saw an incredible neurologist in Dallas that immediately connected with Brinley and was determined to figure it out. She too was a young mother and had a strong feeling something more than a developmental delay was going on with Brinley. After several tests including an MRI came back seemingly clear she recommended we undergo whole-exome genetic testing, which had only recently become widely accessible, to rule out any genetic disorders. And so a few weeks later in August of 2019 when Brinley was 10 months old, we received the diagnosis that she had an incredibly rare genetic disorder called Ogden Syndrome (OS). Our neurologist explained it the best she could while adding it had only been diagnosed in about 100 people at the time- in the entire world, ever. There were so many more questions than answers and we quickly started to realize major challenges would lay ahead for all of us.
Almost immediately after getting the OS diagnosis, Kelly lined up another specialist that was able to formally diagnose Brinley with Autism as well. It was an absolutely critical diagnosis as it helped open so many doors to see other specialists and obtain quick insurance approvals for services like therapy which Brinley desperately needed. Unlike OS, Autism is widely understood and recognized.
Brinley began intense therapy well before her first birthday and while the progress often seems minimal day-in and day-out, especially when you consider the amount of effort it requires of both Brinley and Kelly, we can confidently say Brinley would not be where she is today without it. Her therapy includes Occupational Therapy, Physical Therapy and Speech for a total of three hours twice per week and ABA Therapy in the morning and afternoon for roughly five hours a day. In all, her therapies total approximately 30 hours per week and it’s been at that level for a few years.
The first couple years of therapy were challenging to say the least. Early on, we learned OS affects Brinley’s neuro motor skills so the connection between how Brinley wanted to move versus how she could move was vastly different. She was battling hypotonia in her trunk, hypertonia in her extremities and general muscle weakness. The combination was inhabilitating and an intense PT regimen was necessary if we had any chance of her achieving physical milestones such as walking down the road. The overall effort required of Brinley to accomplish simple milestones, such as sitting-up, nearly took her to exhaustion and caused more tears than anyone wants to witness as a parent. It was heartbreaking. During the early stages of therapy, we even questioned if we were doing the right thing for her. But slowly, we began to see the hard work pay-off and Brinley was getting stronger. At one year old she could sit up. At two and a half years old she stood independently. Then she began spending thirty minutes to an hour a day in a stander, eventually graduating to a gait trainer, to help teach her to walk. She took her first steps at three and a half years old and now she is quickly progressing towards running as she approaches her fourth birthday. Being able to walk has opened up her world so much and she’s so happy! She’s on her third pair of AFO braces which help her stability and confidence in walking. We’re certain the years of intense PT and OT were the key to Brinley walking and it has increased her developmental growth across the board.
Similarly, ABA therapy has been life changing for Brinley and our family. It provides one-on-one support which has been crucial in her overall development, behavior and communication skills. Thanks to the assistance of her one-on-one ABA therapist she is able to attend a typical preschool in a normal classroom three days per week. We’ll also add that the other kids absolutely adore Brinley. At preschool, they are working on peer interaction along with the social norms of a classroom setting so she can be ready for elementary school.
Communication can be a real challenge for Brinley and it’s obviously so important. Her Speech and ABA therapist have done an amazing job working in parallel to improve her communication skills. She can say roughly 10 words and is able to use simple sign language. Our current focus is improving her communication skills to ease her frustrations.
She is now learning how to use a Proloquo communication device and she impresses us every day with what she is learning.
Despite all the challenges she was dealt in life, Brinley was certainly blessed with the ability to instantly connect with people and win their hearts in a matter of moments. She’s incredibly social and loves being around everyone. When she walks into her class all the kids run over to her excitedly shouting “Brinley is here!”. She has a silly and spunky personality and you can’t help but love her. And it’s a good thing she has that going for her because she is certainly a handful and full of sass! Her twin brother would attest to this as she is frequently found chasing him around, swatting him, and giggling while he is running away yelling at her to stop. Sibling love at its finest.
Brinley is the love of our lives, she is so innocent, so loving, and just so pure. It’s hard to put into words the love we have for her, but we could best try to explain it to parents. It is most similar to the kind of unconditional love you have for your children, the kind of love you simply couldn’t comprehend existed until you have kids of your own. The love our entire family has for her is just that, love you simply cannot know until you have someone like Brinley in your life.
While every day brings a new set of challenges, we are incredibly proud of Brinley and her progress. She has to work ridiculously hard and fight to hit every single milestone in her life, the type of milestones that naturally develop with minimal effort for the rest of us like learning to eat, sit up, walk, talk, etc. All of these things are like climbing mountains for Brinley. Thankfully she is incredibly driven and independent almost to a fault. There’s not a mountain she can’t climb and we are so excited for her and her future!
-Kelly and Todd