Tell us your child’s story:
Clay was born with a complex congenital heart defect known as Hypoplastic Left Heart Syndrome. From birth up until 3 years of age he had undergone 5 open heart surgeries. At a year old one of his surgeries failed and he was placed on ECMO. During that time he suffered a stroke that left him paralyzed on his entire left side of his body. Doctors and therapists for years told my family that Clay may never walk nor talk but he has proved everyone wrong!! In 2018, Clay was diagnosed with heart failure and we were told that it would be about 8-10 months before he would receive a heart. Doctors placed a PICC line and started him on IV Milrinone and we went home to wait as a 1B status on the transplant list. June 1st we were readmitted for worsening heart failure. Within a month Clay was maxed out on his Milrinone and other medications were not helping. It seemed like we had exhausted all options when we heard the news that Doctors accepted a heart! Clay received his new heart on August 17th. After months of rehabilitation in the hospital he finally came home October 24th, 2018.
Why did you choose APT for therapy services?
Due to Clay being so weak, his doctors suggested that he received Physical, Occupational, and Speech Therapy three times a week. APT was a great fit for our family because they worked with us to get all of Clay’s therapies grouped together so that we wouldn’t be living there. With Clay being immunocompromised, groups of children aren’t ideal and APT worked with us to keep him away from children and he’s able to be seen when it is less crowded. Speech is also a big issue; his vocal cord was paralyzed during his heart transplant and he aspirates liquids if they are not thickened. We had known about a wonderful speech therapist who worked at APT and was a feeding specialist, and we had to have her!
What improvements have you seen in your child since they started therapy at APT?
Clay has already gotten stronger since starting at APT. He can now walk on a treadmill for 5 minutes. When we first started he could barely walk 2 minutes. With the help of Occupational Therapy, he has also learned how to work with his new tremors instead of letting it work against him. Speech has found new adaptive utensils to help Clay drink without coughing.
What has been your brightest moment along the journey?
I think that the brightest moment is my son being here and proving doctors wrong. Nobody thought that he would live to be 12 years old or that he would ever walk/talk. To see him work on things like running, jumping, and dressing is a miracle. He was never supposed to do these things but with therapy he can!
What advice would you give other parents who face similar situations?
You are not alone!!! Find a parent that you can go through this journey with. It was always hard for me to hear about my friends children meeting milestones while I was told that my child would never meet them. Until I found a support group through our hospital I felt alone, but now I have friends who know what it feels like to go through the journey. I would also tell other parents to give your children every opportunity you can. If I would have accepted that Clay would never walk or talk, I probably wouldn’t have pushed him outside of therapy. These kids are resilient and they will do what they can in their own time!
Clay has worked hard in therapy with assistance from his incredible therapist. Physical Therapist, Kacie Jakatis; Occupational Therapist, Cameron Lile and Speech Therapist, Lauren Doyel. Below they explain the success they have seen with Clay:
How long have you been working with Clay and what improvements have you seen?
PT Kacie: Since 10/31/18. In that time, his walking endurance on the treadmill has improved from under 1 minute at a time to over 5 minutes without resting! His strength is improving and he can hold a “superman” position for over 10 seconds now, after being able to achieve it for just a couple seconds at the beginning.
Lauren: I have had the pleasure of working with Clay since November. We have been working on improving swallow function. Clay began aspirating thin liquids Following his heart transplant and multiple surgeries. We have been working on strengthening the muscles involved with swallowing and implementing strategies to reduce aspiration when he is eating.
OT Cameron: -I have been working with Clay for 2 months. Since he began therapy, I have seen improvements with; self-dressing, endurance, and overall engagement during preferred and non-preferred activities. Clay is a super hard worker and will do (almost) anything!
Describe a little about your and Clay’s relationship:
T Kacie: Clay likes some friendly competition! We’ll do exercises together for motivation. We’ll use a timer or count repetitions and compare his performance to previous sessions in order for him to get motivated to work a little harder. He has an athlete’s mentality!
SLP Lauren: I have known Clay for many years prior to treating him in therapy! He is now a local celebrity full of love and fun. Clay’s smile is contagious and even when he isn’t having the best day, he always finds a way to joke and play. Our relationship is FUN! Everyday is a special day when Clay is involved. I’m so thankful to be a part of his therapy team! Courageous Clay is simply the best!!
OT Cameron:-Clay and I get along great! He is always up for a little negotiation to trade hard work for a game of his choice. Clay is willing to work hard during therapy and always has a positive attitude when he enters OT sessions. I am truly blessed to be able to work closely with Clay (and family) and so thankful that they allow me to be apart of his journey.