Tell us your child’s story…
Arthur was born 3 weeks early due to lack of fetal growth and he was breech. He was considered an IUGR (Intrauterine Growth Restriction) baby. Arthur was special from the very beginning. He was born with out muscle tone, had given himself a concussion in utero, had two holes in his heart and he had a bloody foot. Genetics was involved immediately and at 16 days of birth he was diagnosed with a rare genetic disorder called Prader Willi Syndrome. He also has a secondary condition on chromosome 16 which still does not have a name. With PWS Arthur can not regulate his core body temperature, he doesn’t make his own hormones so he takes a shot of growth hormone nightly. There are some developmental delays and he cannot regulate his food intake. For this Arthur will never know his body is full from food. He feels like he is starving 24/7. Since birth Arthur has seen 36 specialists all over the US and has over 1500 appointments documented. He has had 5 surgeries to date all related to getting him healthy and stronger
Why did you choose APT for therapy services?
We have been apart of APT for a long time, after three years of completing First Steps we knew we needed to keep the therapy sessions going for Arthur because it was going to be the only way for him to progress in his body and keep him stronger and be able to keep up with his peers. APT is one of the best decisions we made because the therapists that have been involved with his care have been extremely amazing. They are at the top of the chain in getting him to keep trying new things and keep him interested. We hope to be here as long as physically possible for him to reach his ultimate potential.
What improvements have you seen in your child since they started therapy at APT?
Arthur has had tremendous progress in speech and his verbal dialog. He has increased his physical endurance and coordination with each visit. In Occupational Therapy his hand strength has increased and he’s able to hold a crayon and pencil so much better then when he first started. When you have little to no muscle tone just basic skills of holding things and using them at the same time is a challenge but he really gives it his all every week.
What has been your brightest moment along the journey?
I think our brightest moment has to be every time we walk into the APT building Arthur completely lights up with so much excitement and joy to see his favorite therapists! Every week he has the biggest grin and a bounce in his step to get started and he is absolutely a gem in their eyes. Knowing he loves it so much that he wants to go every week is so special and that it is not a chore, he has so much fun every time the therapy dogs are present too. Every time we have to go, he asks if the dogs are going to play with him today. If they are not, he responds, “ok hopefully tomorrow!”
What advice would you give other parents who face similar situations?
I would say as soon as you can, start therapy sessions. Whether you are still in the NICU, which Arthur did at 4 days old, or just getting a diagnosis later, get started ASAP. Get involved with a support group, reach out on Facebook or other social media platforms and see if anyone in your area has a similar child because that connection is so vital. The biggest thing is never ever lose hope in your child’s ability to grow and master a task. In our community we don’t call them milestones we call them “inchstones” because inch by inch they will get there! Your child is absolutely incredible and therapy support at APT will help them along their journey!
Occupational Therapist, Amber Applegate, Speech Language Pathologist, Carly Bryant and Physical Therapist, Cathy Stewart have made up the team of incredible therapists’ who have rallied around Arthur and worked diligently to assist him in reaching his next therapeutic level. Read below as they each share the improvements they have seen and the relationship they each share with Arthur.
How long have you been working with Arthur and what improvements have you seen?
Amber, OT: “I have been working with Arthur on and off since 2017. In occupational therapy, we focus mainly on his fine motor skills such as: cutting, prewriting, management of tabletop clothing fasteners, and other small manipulation tasks for play and self-care. Arthur has also been working really hard on his dressing skills. He is now able to get himself dressed pretty much on his own. It is always fun to see what he has decided to wear for the day, and he is always excited to be able to do these things more on his own!”
Carly, SLP: “I first evaluated Arthur in September 2017 as a SIRH patient, so I have been working with him for a little over 2 years on and off. Looking back at his initial evaluation, when he first came to therapy, he had an expressive vocabulary of about 20 words. His vocabulary since then has significantly increased and allows him to more easily express his wants and needs with a variety of listeners. He is talking in phrases and simple sentences now and his speech clarity continues to improve.”
Cathy, PT: “I have been working with Arthur for about 2 years, on and off. During that time, he has grown from a toddler to a bona fide preschooler! I have, of course as his PT, focused on his physical and gross motor development, which has improved steadily over the time we have worked together. I would have to say though that the improvement in his communication skills has been the most dramatic change. Now, he is much better able to express himself which really supports his interest in keeping up and interacting with his family and peers. This, in turn, helps to improve his overall gross motor skills.”
Describe a little about your and Arthur’s relationship.
Amber: “Arthur is the friendliest little guy. He lights up the room. Every day when I go get him from the waiting area, I get a huge grin and big hug from as he yells “Ms. Amber!!!!” He is always excited to come to therapy, which makes my day and makes my job so much fun! Everyone in the office knows Arthur. He is such a social butterfly. He always likes to stop to say hi to everyone he sees when he comes into the gym before we start our therapy session. It has been so much fun to watch his skills improve. He has become much more independent with activities and his vocabulary has come such a long way. It is exciting to hear the stories he has to tell and learn about the new skills he is carrying over at home every week!”
Carly: “Arthur always puts a smile on my face. He’s always been social, but his expressive language and speech delays made it difficult for him to socialize effectively. He is so friendly, and I’ve enjoyed seeing him be able to express himself more clearly with others and seeing others understand him
more without me translating in the therapy gym during social interactions. He loves to greet his therapists by name; something about hearing a child say my name with such excitement really does brighten my day.”
Cathy: “Anyone who meets Arthur easily develops a great relationship with this delightful little boy! He is so engaging, and he draws you right in. He is literally almost always smiling so it’s almost impossible to have a bad day around Arthur. He makes me look forward to coming to work.”
What is one of your favorite moments you have shared with Arthur?
Amber: “We have therapy dogs that come to our clinic at times, and Arthur just lights up when he gets to play with the dogs. The therapy dogs motivate him so much and it is so fun to see their interaction with one another. Another favorite memory of Arthur is when he is able to overcome a challenge and complete a task. He will light up and look at me with that big smile and exclaim “I DID IT”. Moments like these, with Arthur, are the exact thing that keeps me going and is absolutely why I love what I do!”
Carly: “Arthur and I have had a lot of fun in our therapy sessions. I can’t pinpoint one favorite moment, but I remember being very excited when he started putting words together to create phrases and sentences on his own that I hadn’t heard him say before. He continues to come up with new things to say all the time now and I love celebrating these moments together.”
Cathy: “I love it when he accomplishes something he has been working on. Anything from figuring out a word he is trying to tell me to being able to jump the right way to finding just the right puzzle piece he’s been looking for. Arthur has a way of making every moment your favorite moment!”