Gerrie's Gazette February 2022

Inside this Issue:

• Celebrate Black History Month!
• AzEIP Employee Spotlight: Caroline Nailor-Oglesby
• Family Story: The Miller Family
• Provider Story: Northland-Rural Therapy Associates
• DDD Medallion Program
• "Team Awareness and Acceptance"
• AHCCCS Resources
• ASDB's Mary Ann Lester Retires
• Early Head Start Corner
• Resources
• Events
• AzEIP Materials Available Online

Family Story:

The Miller Family

Brittany and Ryan with their daughters Juliette, Audrey and Brooke

During the busy holiday season of 2009, life literally changed overnight for the Miller family. Having three young daughters ages 4 and under, Brittany and Ryan had a happy, chaotic schedule with their little girls and had no idea what was in store for their family when Brooke, their youngest, was born. When Brooke was five weeks old the Millers took their daughters to a holiday event to see Santa. As expected, there was excitement and anticipation in the air as their oldest two, Juliette and Audrey, were the perfect age for all of the Christmas magic. Brittany held back with Brookie during the festivities, keeping her away from the crowd and nursing her under a blanket while Ryan took the older two to visit with Santa Claus. During the commotion, Brittany noticed that Brookie was jerking and making odd movements that did not seem like normal newborn behavior. Alerting Ryan, they kept a close eye on Brookie and the concern for what was going on with her rapidly grew.

Brittany frantically called the afterhours nurse line for her girls’ pediatrician. “All I could remember from our conversation was the word ‘seizures’,” shares Brittany. “Anything else the nurse urgently shared with me during that call is a blur, but I will never forget her concerned voice telling me on the line that our little daughter may be experiencing seizures, and to rush her to Phoenix Children’s Hospital right away.”

The next twenty-four hours were a whirlwind for the Miller family. Brooke was admitted to the hospital immediately. Test after test was run, trying to determine what was causing this five-week-old baby to have seizures. By the next day, Brookie had a grim diagnosis of Aicardi Syndrome, Cerebral Palsy, and epilepsy, and a list of other medical complexities. Aicardi Syndrome is a rare neurological disorder that predominantly affects girls, is life limiting, and comes with a lifetime of global disabilities, intractable epilepsy and countless medical issues. Understandably, the Millers were devastated and overwhelmed at the new life they now had to face with their beloved baby girl.

Thankfully, with the support of a helpful social worker at the hospital, Brookie was referred to Arizona Early Intervention and the Division for Developmental Disabilities. At two months old, Brookie started receiving AZEIP services. “I remember juggling therapies in those early days with my then four-year old, two-year old, and two month-old in tow. While it was a crazy busy time, it was filled with tender moments as her sisters learned and grew right alongside Brookie and were right in the mix of her AzEIP therapy sessions,” Brittany shares. Brooke had a wonderful early intervention team and received physical, occupational and speech therapies weekly, along with developmental instruction with a therapist from the Foundation for Blind Children, as Brookie is also visually impaired. Brookie’s AzEIP team was invaluable not only for helping her make progress and gains in her development, but also for emotional support for the Millers. “These talented and compassionate therapists helped our little baby girl meet goals we never thought she would ever accomplish. I remember crying happily with her devoted physical therapist when Brookie finally turned over on her own and again when Brookie learned to sit up as she was graduating from early intervention. This miracle girl was surprising us all and we had a front row seat! Her service coordinator became a dear friend and together with her AzEIP team we helped Brooke beat the odds and meet milestones I never dreamed she would accomplish. Her medical team was astounded at her progress, and she quickly earned the well-deserved nickname ‘Brookie the Brave!””

Brittany loved the whole family approach for AzEIP and learned to incorporate the goals Brooke was working on into their family life. Brookie had feeding therapy with her speech therapist, right alongside her sisters while they ate lunch. Physical and occupational therapy was during morning playtime. Juliette and Audrey were welcomed into the therapy sessions, and it made them feel a part of Brookie’s progress. “I am so grateful her therapists cared for all three of our daughters and supported us through the most challenging time in our lives. We were definitely not alone, and it [meant] everything.” Brittany shares gratefully.

AZEIP not only provided a crucial start for Brookie and helped her progress despite her extensive diagnoses, the program also equipped the Miller family with tools to help Brookie, taught them resilience, and guided them through an otherwise incredibly difficult time. Thankfully, the lessons learned in the early intervention program had a lasting impact on Brookie and she is still beating the odds today. While life is still filled with big challenges, the Millers have grown stronger together and feel privileged to be raising such wonderful, brave daughters.

“When venturing into parenting, you never think you will be the one who has a child with intense disabilities and medical issues, that happens to other families… and then you are, and life is never the same again,” said Brittany.

“But the good news is… life is better, more fulfilling, more tender, more stressful, yet more treasured. We are so grateful that on Brookie’s incredible journey, while we have been tested beyond our limits we have never been on our own. The Arizona Early Intervention program was integral to our daughter’s development and our healing, and we will be forever grateful.”