Tell us your child’s story.
Samuel was a healthy baby boy, born at 39 weeks by scheduled c-section 7 pounds 11 ounces & 21 inches long. Shortly before his 6-month well child check-up, we noticed Samuel was not rolling over or sitting up unassisted. We discussed our concerns with our Pediatrician at our 6-month visit and he was diagnosed with Hypotonia (low-muscle tone). Our Pediatrician referred us to First Steps and stated Samuel just needed to get stronger with some physical therapy services. At that time, our Pediatrician also referred us to Pediatric Neurology for a Consultation. We had to wait six weeks for our appointment and Samuel seemed to be growing weaker by the day. At our Neurology appointment the Neurologists conducted a thorough assessment and immediately recommended Samuel get tested for SMA (Spinal Muscular Atrophy). We had never heard of SMA, but we sensed their urgency and agreed to the quick result test for SMA. It is a rare, genetic disease that no one on either side of our family had ever had. Four days later, when Samuel was 7 1/2 months old, we received his diagnosis of SMA #1.
Why did you choose APT for therapy services?
Our Pediatrician referred us to APT for Physical Therapy services.
What improvements have you seen in your child since they started therapy at APT?
It is a evident that Samuel is getting stronger every day. In the past, Physical Therapy services were difficult for individuals with an SMA diagnosis, due to their disease process. Times have now changed dramatically. The FDA approved the only medication available or the treatment of SMA in December 2016. This medication, Spinraza, is injected directly into the spinal fluid of the individual through a lumbar puncture. Spinraza, in conjunction with Physical Therapy services, are showing great results in building the strength and coordination of individuals with SMA. We celebrate all of Samuel’s movements, whether they are big or small, and are excited for what his future holds.
What has been your brightest moment along the journey?
We have had several bright moments in this short time since beginning treatment and physical therapy with APT. One bright moment is our relationship with our Physical Therapist, Audrey. She is wonderful, dedicated and loving and we look forward to our time working with her each week. Another bright moment was the first time we saw Samuel reach up against gravity and grab at his toy rings when he had never seen him do that before. Also, seeing him upright in his stander….that was definitely a bright spot for us!
What advice would you give other parents who face similar situations?
First and foremost, I rely strongly on my faith walk and my relationship with God. Without Him, I would not be able to do what I do on a daily basis as Samuel’s mother and primary caregiver. Secondly, it’s important to slow down and take it one day at a time. Receiving a diagnosis, such as the one we received with Samuel, was extremely difficult and life-altering. It can dictate your entire life without you even realizing it. I always say, “I will focus on today….just today…and do my best to make that day a success!” It’s ok if you’re not able to do everything you want to do or accomplish every goal you had set for yourself to accomplish. Just give it your best go at it and if it doesn’t happen you can always try again tomorrow.
Physical Therapist, Audrey Harsh, has been working with Samuel. We asked her to share a little about their journey together.
How long have you been working with Samuel?
I have been working with this patient since the beginning of July. I have seen huge improvements in his sitting balance, strength in his arms and legs, and his ability to hold his head up by himself. We have also been practicing rolling with assistance and trialing a stander for the first time over the last 2-3 weeks (actually got to give him his first birthday cupcake to play with in the stander 2 weeks ago!)
Describe your relationship with Samuel?
Due to his disease, progress is slow but steady with the new medication he’s been receiving. This friend is a wonderfully hard worker, easy going and willing to try anything as long as there are bubbles involved. 🙂 He’s a total ham for the camera too, and Mom tracks his daily progress with pictures and videos and shares them with me often. I hope I have been both an encouragement and support to this patient and family after their recent diagnoses and need for intensive rehab services. We have celebrated many small victories and looking forward to many more! It’s been a blast to work with this family and patient!