Arianna

[vc_row bg_color=””][vc_column width=”1/1″][ish_separator color=”color7″][vc_column_text]Arianna is 3 years old and lives with Infantile Fibromatosis.

Specialists at Children’s Clinics work closely with Arianna and her family, as there are many unknowns with her condition. She sees her ophthalmologist, physical therapist, occupational therapist, and audiologist all at Children’s Clinics. Arianna’s mother, Connie, says “To have a child with so many specialists, it has been extremely convenient to have them all in one place.”

The impact of the Adaptive Recreation Program on our family

A message from Connie:

“Arianna loves riding her tricycle she received from the Adaptive Recreation Program. It has allowed her to be mobile in a way equal to her peers.  Both her father and I have always loved bike riding and it thrills me to see her be able to ride, too. Exercise is such an integral part of a child’s life and the adaptive tricycle has made that possible for her. Prior to receiving her tricycle she was always pushed in a stroller around the neighborhood but now she can ride her bike. Even if it’s a short distance to the corner and back, the important thing is she’s doing it. This is such a huge, positive impact on her physical and mental wellbeing. We are certainly grateful.

I have previously ridden in the Tour de Tucson and 2016 was Arianna’s first time to join in the fun ride. She’s benefited so much from Children’s Clinics that it’s an honor for both of us to ride for the Children’s Clinics.

My hope is that many more children will benefit from the Adaptive Recreation Program and be empowered with another form of physical activity and the benefits thereof.”[/vc_column_text][/vc_column][/vc_row]

Jaclyn & Aidan

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When you meet Jaclyn Larson you are struck by both her youth and her maturity. The 24-year-old’s son, Aidan, is now seven years old, and the traumatic brain injury he suffered at age two has altered the course of their lives.

When Jaclyn’s not in class at Pima Community College and Aidan’s home from the special education program at Lynn-Urquides Elementary School, they’re together. At other times, their large and extended family is a great help.

Jaclyn and Aidan live with her grandmother, and Jaclyn’s parents and siblings live next door. Her aunt, uncle and cousins live in a home just adjacent to her grandmother’s house. Aidan’s family on his dad’s side are part of their lives as well. Jaclyn can tell you that it takes a village to raise a child with special healthcare needs, and Children’s Clinics is a part of their village.

Jaclyn, the parent representative on the Children’s Clinics Board of Directors, has learned a lot in the five years since a car accident changed Aidan’s life and the lives of those who love him. She knows the ins and outs of wheelchairs and walking devices, feeding tubes and how to puree healthy food to attain just the right daily caloric count. She records her voice on Aidan’s “talker” so he can push a button and use her voice to “ask” for what he needs.

Ask Jaclyn about Aidan’s progress and she’ll tell you it’s important not to have hard and fast expectations, that their goals change as Aidan progresses both in expected and sometimes unexpected ways. “I want him to be as independent as possible,” Jaclyn says. “But I’m not expecting he’ll be able to live on his own when he’s 18.”

Children’s Clinics physicians, rehabilitation specialists, and other staff have supported Jaclyn and Aidan since they were discharged from the trauma unit at what was University Medical Center at the time. “Everyone at Children’s Clinics knows Aidan and me. They don’t even ask for our names when we arrive. I used to be a very shy person, but seeing the same faces and interacting with other parents and children has helped so much.”

Why a Medical Home?

Aidan’s needs and the needs of his extended family illustrate why a “medical home” is so critical. The whole family benefits because they can access the very best care in a warm and supportive environment, all under one roof.

We schedule our patients for an array of appointments in one visit to the clinic, removing the burden of traveling to numerous medical appointments across the city. For example, during a four-hour clinic visit, patients with Spina Bifida see an orthopedic surgeon, developmental pediatrician, urologist, psychologist, physical therapist, education specialist, medical social worker, nurse coordinator, nutritionist, and child life specialist. Medical records are easily accessed by all and the team meets after a clinic visit to discuss each patient’s progress and needs.

As the family’s medical home, we also offer primary care for all the children in a family.

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Ivan

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Ivan, who is now 24 years old, has been a patient at Children’s Clinics for more than 17 years. Ivan began coming to the clinic for treatment of Cerebral Palsy, severe seizures, and Congenital Tracheomalacia. With the care and treatment he has received from a Cerebral Palsy team, neurologist, ENT, ophthalmologist, dentist, and primary care physician, Ivan has been able to lead a more comfortable, happy, and productive life.

The relationship Ivan has with his parents is awe inspiring. They are completely devoted to him and providing the care he needs. Sabino, Ivan’s dad, said, “He is our source of energy to keep going. His will to live is a great inspiration to us.” Ivan enjoys making music with Sabino. Ivan’s mom, Antonia, helps him create beautiful works of digital art that are turned into heartfelt greeting cards. Though Ivan struggles with his health from time to time and is unable to venture out on public outings as much as he’d like, there is no shortage of social interaction with his family and friends. Ivan enjoys telephone and video calls from his grandparents and very close friends.

Sabino shared that Children’s Clinics and Square & Compass have been a blessing to their family. Walking through the halls is very much like walking in their own home, but with a few more caring hands. They always receive smiles and prompt answers to their questions and concerns regarding Ivan’s health. Children’s Clinics and Square & Compass are not only with them when they are here, but have become an important part of their lives. They have had great experiences and have made life-long memories at the Clinic. Sabino commented, “From the front desk to the Square & Compass office, and in between, people have been so wonderful. Many of Ivan’s experiences may have never occurred without the support of Children’s Clinics and Square & Compass, and we know we are not the only ones blessed by their support. BIG THANKS!”

The partnership between Children’s Clinics and Square & Compass has allowed Ivan and kids like him to receive complex medical care, and so much more, under one roof. With the help of contributions made by generous donors, we also lessen the burden on families, like Ivan’s, that face these complicated issues every day.

To see music videos and artwork created by Ivan and his parents visit:

https://www.youtube.com/user/saby7

https://www.facebook.com/Antonia.Ivan

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DJ

At age six it became apparent that our son, DJ, was very quickly losing his ability to hear. As we wrestled with our fears for him, our pediatrician connected us to Children’s Clinics. Our nerves were calmed a bit when we were greeted at the Clinic and saw the children in the lobby watching movies, saw the games and crafts for the kids, a beautiful fish tank, and more. It helped put our minds slightly at ease. I remember thinking “Maybe this would  work out… Maybe this is not just a professional healthcare facility, but one that really cares about kids.” Mary, our audiologist, took the time to listen as we poured out our hearts and asked question after question. She was there not only for DJ but for my wife, Kim, and me, always going the extra mile.

DJ’s diagnosis of progressive bilateral hearing loss was followed by several months of visits to Children’s Clinics, seeing several interdisciplinary teams. Each time, we were treated with kindness, love, and respect, and the doctors and staff took the time to answer all of our questions, and also to make sure DJ was well cared for.

DJ was later diagnosed with bilateral enlargement of the vestibular aqueducts and a bicuspid aortic valve. But we had the answers we needed and knew that treatment was available. DJ adapted almost immediately to wearing hearing aids in both ears, and we saw improvement in his social and learning skills.

DJ was now able to enjoy life more, from shooting hoops, seeing the Diamondbacks play (he’s a Diamondbacks SUPERFAN!) or enjoying a movie with his mom and dad. His progressive hearing loss continued, however, and his hearing aids finally reached their limits.

The Clinic then introduced us to cochlear implants, and DJ became a candidate. New-found hope brought tears to my eyes as we learned that implants would mean he would always have some level of hearing available. The surgeries were completed flawlessly by Dr. Parry, another medical professional we met at Children’s Clinics.

The implants work far beyond our hopes and dreams. With his implants he now hears better than I believe he ever did with hearing aids. It is absolutely amazing. From music, to speech, to going to a ballgame, DJ hears everything, and his learning and social growth have improved.

What a roller coaster of emotions this has been for us, from deep fear and sadness initially to a glowing heart, and knowing that our son is, and continues to be, taken care of. DJ has remained extremely strong this entire time. Now three years later, DJ is almost nine. I couldn’t be more proud of my son’s strength, as he continues to be a fun-loving, kind-hearted soul. He will do amazing things in his life, due in large measure to what Children’s Clinics has done for him.

From the bottom of my heart, thank you… all of you. You are making a difference.  Thank you.

– David J. Jacobson (DJ’s father)