Meet Casen & Jorge

Casen’s Story.

 

Mr. Casen was born with Charge syndrome and Complete Digeorge syndrome. Complete Digeorge syndrome means that he was born without his Thymus gland. The Thymus gland is responsible for fighting viruses and bacterial infections, therefore even a common cold could have killed him. When he was 13 months old he received a Thymus transplant at Duke University in North Carolina! His immune system is coming in quite nicely and he is developing good t cells. However he still has alot of airway issues, and has a trach and is on oxygen 24/7. His pulmonologist does not know how his lungs will handle a virus, so we are still in isolation and have to be careful in order to keep him safe. Visitors to our home are very limited and require reversed isolation precautions (a gown, gloves, and mask).

 

Why did you choose APT for teletherapy services?

 

With Casen’s immune deficiency and his airway issues, it wasn’t in his best interest to have therapists coming in the house during the cold and flu season this year.

 

What improvements have you seen in your child since they started therapy at APT?

 

He has started rolling/scooting across the house. He sits up for longer periods of time, and his balance is much better.

 

What has been your brightest moment along the journey?

 

Seeing Casen grow and become stronger! I also love that he has the independence now of his gait trainer! He can follow me around the house….sometimes he even “chases” me, which is so funny. That is something he couldn’t do before.

 

What advice would you give other parents who face similar situations?

 

Don’t ever give up!!

Physical Therapist, Amy Martin, treats Casen through teletherapy. We asked her to share a little about their journey together.

 

How long have you been working with Casen and what improvements have you seen?

 

I have been working with Casen for 10 months. In that time he has gone from being mostly stationary unless positioned to rolling and scooting all over the house. He is wanting to be upright and using a gait trainer in the home to help with him exploring while learning to stand and ambulate. He is more curious and engaging and I feel like I’m seeing personality emerging, which is incredible.

 

Describe a little about your and Casen’s relationship.

 

Casen is a hard worker, but he definitely lets me know when an activity is not preferred. It’s been amazing to watch him progress during physical therapy and come up with ideas to challenge him as our relationship is unique due to his immune status. His family is amazing and very receptive to recommendations, which I believe is why he is progressing so well with his motor skills.

 

Jorge’s Story.

 

When Jorge was close to turning 3 years old, we were concerned as he was only interested in trying baby food (soft-like textures) while not expanding his palate for solid food. Jorge was reluctant to try new things and his gag reflex was increasing with even his regular diet. We were also concerned about the level of anxiety displayed with any attempt to introduce new food.

 

Why did you choose APT for therapy services?

 

Jorge spent almost one year with First Steps pediatric therapy receiving occupational therapy. They, along with the staff of the preschool he was attending, recommended us to follow up the service with Associates in Pediatric Therapy.

 

What improvements have you seen in your child since they started therapy at APT?

 

Understanding this is a long process, Jorge has been able to expand his menu, as well as control his anxiety. Miss Jessica, Jorge’s therapist, has been working with him for over 2 years, and it is incredible how well she understands and adapts to Jorge’s needs. Jorge is now also less averse to try new foods and his gag reflex has improved.

 

What has been your brightest moment along the journey?

 

There is more than one bright moment throughout this process so far. Jorge now realizes the purpose of each session. The sense of accomplishment and pride when he achieves each of his goals is great to witness and encouraging for us parents. None of this would have been possible without Miss Jessica and her proactive approach to our child’s needs and willingness to research and provide us with new tools and techniques in order to achieve his targets.

 

What advice would you give other parents who face similar situations?

 

As a mom, there is always an intuition to identify when your child is struggling. Therefore, realizing that your child has some sort of an issue and to being open about it is crucial. There are so many people in the same situation and through openness, life can become less stressful, knowing there is  always somebody that has been through something similar. Seeking professional help soon enough, is the other important element in a situation like this, and that is where APT has played such an impactful role in our child’s life.

Occupational Therapist, Jessica Aylor treats Jorge through teletherapy. We asked her to share her a little about their journey together.

How long have you been working with Jorge and what improvements have you seen?

 

Jorge and I started working together in 2015, right before his third birthday. Back then his diet was extremely limited, and he was very anxious when new foods were introduced. Over the course of almost three years, he has added so many new foods to his diet! I’ll never forget how he beamed with pride, the first time his mom told me he was able to enjoy a special treat after soccer with his teammates because he wasn’t afraid to try a new food. Jorge’s family has greatly contributed to his progress, which is one reason I knew teletherapy would be a good option. During our teletherapy sessions his family not only cheered him on, but also joined in the food games. Teletherapy in addition to our face-to-face sessions was very helpful to bridge the gap between home and clinic. It allowed me to see Jorge in his natural environment, and provided a way for his family to participate as well.

 

Describe a little about your and Jorge’s relationship.

 

In the beginning it took Jorge a while to warm-up to me, but now our sessions start with a smile and end with a hug. Jorge is very competitive and loves incorporating games into our sessions. If I were to choose one word to describe our relationship it would be fun because no matter how difficult the food challenges may be for the day, we always end with a fun activity.