August Patient Spotlight: Jacob!

Jacob was born with Hypoplastic Right Heart Syndrome. We found out about his heart defect while he was still in utero and were told by some he would not live. After multiple physician consults and much collaboration, Jacob underwent his first open heart surgery at 14 days old. He has had a total of five open heart surgeries and multiple heart catheterizations.

Tell us your child’s story.

Our hearts were broken when Jacob developed a grade-four brain bleed when he was only weeks old.  He stopped using his right side, stopped taking foods orally, and stopped any meeting milestones. We were told to never expect Jacob to walk, talk or take care of himself.

Through all of his struggles, Jacob never lost the light in his eyes or the will in his heart. He has overcome many hurdles and has never accepted defeat.  He continues to have the wants and desires to grow and learn.  As his parents, we want to allow him every opportunity to develop.  Jacob began First Steps as soon as he was eligible for the program and transitioned to APT when he aged out of First Steps.  Jacob has received PT, OT, and ST for most of his life.

Today Jacob is a 6th grader at East Middle School, an honorary manager for the Martha Lane Collins High School football team and avid Louisville Cardinal Fan.  He loves any sport and can make any event a competition.  Jacob loves to go to new places. He never meets a stranger and easily becomes the center of attention in the room.

Why did you choose APT for therapy services?

We chose APT because of its close proximity to our home and the enthusiastic nature of the employees.  We were lucky enough to work with Renea in the First Steps program prior to APT, so we trusted her completely with our son.

The enthusiasm at APT is contagious, spilling over to the patients and families.  The staff let you know you are not alone in this journey. They offer support to the patient and family.  They help you focus on today’s accomplishments, making tomorrow’s milestones achievable.

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

Jacob was tube fed for about the first year of his life due to an oral aversion. He did not like anything put in his mouth because he had spent a large time of his life on a ventilator.   With the help of speech therapy he learned to eat foods and overcame his oral aversion. Jacob learned a lot of sign language at a younger age to help him communicate his needs.  As he continues to work with speech therapy, he is talking all the time, becoming clearer with his speech and we can’t keep him quiet!

Jacob has right side weakness and did not walk until the age of 5.  Physical and occupational therapies have helped us develop play techniques that encourage physical development.  Jacob has learned modified techniques that allow him to transfer and dress independently.  He is fiercely independent and continues to push through his different abilities to allow him to live life to the fullest.

All of these therapies assist in cognition development as Jacob learns new tasks. With the help of his teachers, therapists and his love for the Louisville Cardinals, Jacob was able to use player’s jersey numbers to learn his numbers.  Now that is creative thinking!

He is growing and learning more than was ever expected.  He is a miracle and therapy has played a big part in his success.

What has been your brightest moment along the journey?

There have been so many bright moments along our journey.

I can remember the first time he said his brother’s name.  His speech therapist was there and we both looked at each other in astonishment and laughed because he was chastising his brother like a parent.

I can remember Jacob’s dad franticly running through the house trying to find me to tell me Jacob WALKED across the room to get a ball for the first time at the age of 5.  I was in disbelief and couldn’t wait to see it for myself.  I think we wore him out that night chasing after balls.

More recently, Jacob helped his little sister learn her alphabet prior to kindergarten.  I listened, in awe, as he showed her the letters and sounded them out with her. He then turned around and quizzed her with flash cards, much like a therapist.

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

Don’t be afraid to be your child’s voice.  Don’t be afraid to ask questions.  Don’t be afraid to seek second opinions. You are your child’s biggest advocate.  You know your child and you want what is best for your child.  Seek help and guidance along the way; you will find you are not alone.

But above all of this, love your child for who your child is and will become with your love.  Love is the greatest gift you can give your child.  You were chosen to be your child’s parent or guardian.  It is through your love your child will grow and learn and become the best versions of them.

Speech Therapist, Megan Kuussalo and Occupational Therapy Assistant, Toni Husband see Jacob at APT. We asked them to share a little about their journey with him.

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

Megan:

I have had the pleasure of working with Jacob for almost 4 years now! It is amazing how much he has grown up and progressed not only in therapy, but in his life as well. He had originally seen Ms. Renea Sageser for several years when he was younger. I had some big shoes to fill, but I was excited to get to know this charismatic kid who lit up the room with his smile. At the beginning, our sessions were not all smooth sailing! I strived to find the perfect formula between challenging him with supports and pushing him too much. I can remember having to give some pep talks, but he was always able to pick his head back up and finish our tasks. I am SO very proud of Jacob’s progress with his speech sound production, phonemic awareness, and specific expressive and receptive language skills. He has come a long way with his articulation and phonological skills, which help him in his favorite pastime- socializing! He is flying through the MAPs card program, and I love watching how proud he is with himself when I praise his hard work.

Toni:

Jacob has been coming to see me for a little over a year and a half. (1yr. 9 months) Jacob has made functional improvements in self care skills to promote independence with ADL. (activities of daily living) He has demonstrated progress in his ability to complete some AAROM (active assist range of motion). Jacob also has a great fear of dogs. When he comes for skilled OT there is a therapy dog in the waiting room. Jacob is now able to enter the waiting room and sit within feet of the dog. This is huge progress for him.

Describe a little about yours and Jacob’s relationship.

Megan:

I see Jacob on Wednesday afternoons at the Shelbyville clinic. He comes to me towards the end of a long day, and he is the perfect pick-me-up! He makes me laugh out loud at least once every session. Our personalities mesh well; we can joke around with each other and motivate ourselves at the same time. He LOVES talking about sports/teaching me about sports. Each session usually starts off with “So- and- so (team) got beat…” which of course gives us a lot of dialogue to work with! We also share a kindred love for UofL and Rick Pitino (Go Cards!). He does not let any speech deficits deter him from spouting off all of his favorite player’s names. Everyone knows when Jacob is in the building- from other therapists to office staff- they all love him! Sure, we have some days where we are tired, yet it usually only takes a few reminders that we get to play basketball after we work. He loves looking at my pictures on my Ipad, and is curious to know who everyone is and what they are doing- he has recently started asking me conversational questions about my life, i.e.“What’s your dog doing?” which makes me smile and gives us some material for therapy as well. I am very lucky to get to work with such a funny, awesome kid.

Toni:

Jacob is funny and fun loving. He really enjoys sports and frequently wants to play basketball for breaks during therapy. Every session Jacob will ask about my daughter and my dogs. He frequently asks to look at pictures of my dogs. Jacob is aware that he and my daughter attended the same school (until this year, he is now a middle schooler) and would always greet me when I would come eat lunch with her. He has a great smile and a warm personality.

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