Tell us your child’s story:
My granddaughter De’Zire was born at 33 weeks by emergency cesarean section. I am her maternal grandmother and I go by Nonna which means “Grandmother” in Italian. I have been raising her by myself since birth. She was born with severe growth restriction, reverse blood flow, anemia, aspiration with respiratory distress, Congenital Heart Disease and a large PFO in the upper chambers of the heart that is still present to this day. Her 8 weeks after birth were extremely difficult. During those 8 weeks she was at Norton Children’s Hospital in downtown Louisville. Her blood sugar could not regulate, her platelets were so low that she needed 2 blood transfusions and her bilirubin was low and needed to be under the lights for many weeks. She had severe fetal malnutrition. De’Zire had a in utero stroke and on her 2nd day of life she had a bad seizure and day 3 she had another stroke that caused an Intraparenchymal Hematoma on the left and a mid-line shift of the brain to the right that resulted in the Grade 4 Hematoma, which has left her with right sided Spastic Hemiplegia Cerebral Palsy, affecting both right upper and lower extremities. She was born with a very rare case of Congenital Severe Protein C and S deficiency and that is still present today as well as a Metaphyseal Fracture on both lower extremities. In addtion, De’Zire has Osteogenesis Imperfecta, Chromosomal Abnormalities and Beckwith-Wiedemann Syndrome which requires blood tests to check for cancer markers that she will have done every 3 months until age 7 and then every 6 months till age 10 when the risk of cancer is significantly lower. This syndrome makes the body and some limbs grow faster than they should. In her case, her left arm, hand, leg and foot are significantly larger and longer. She has a Sensory Processing Disorder that affects her everyday living as well as a food texture disorder that prevents her from eating just about everything. Feeding is difficult because she pockets food on the right side of her mouth and her brain just cannot send the signal for her to be able to chew foods and swallow them, due to her strokes. She has speech delay as well as difficulty with fine and gross motor skills. De’Zire cannot walk unassisted but is learning how to in her gait trainer and has recently learned how to crawl and take steps from a sitting position as well as pulling herself to a standing position by holding onto a piece of furniture. She is an amazing little girl who despite all the odds stacked against her fights through them. She is admirable and inspiring and is so eager to learn anything that is presented to her.
She sees 4 therapists with Associates in Pediatric Therapy. One Speech Therapist for language and another Speech Therapist for feeding. In addition to Speech she sees an Occupational Therapist as well as a Physical Therapist. De’Zire also gets in home Occupational Therapy through First Steps and has since she was 3 months old. In addition to therapy she sees 13 different doctors in various specialties as well. We live a very busy life with so many wonderful medical professionals that has helped her in ways that one could only hope and imagine. I am grateful for the education that I receive while being hands on in all therapy sessions. I play an active role in bringing everything that is done during sessions home. It isn’t easy constantly having 9-12 appointments every week between therapy and specialist. De’Zire couldn’t have thrived as she has without them, and I am beyond grateful for each and every one.
Why did you choose APT for therapy services?
I sought out APT for a few reasons. I did my research about APT and chose them because of the great reviews from parents who have their children go there. I went to De’Zire’s Pediatrician, Dr. James Tipton and discussed with him my desire to help De’Zire as much as I can so that she can have the skills needed to have a decent life with her disabilities. We spoke of her needing a great Physical Therapist, one who could push her through the obstacles and get her physically stronger so that one day she can stand, walk and crawl. I have witnessed firsthand how important it is to have a great therapist who knows what needs to be done with De’Zire. One who would design a plan just for her and set and meet those goals to help her be independent one day.
I then talked with her Pediatrician and expressed my concerns with her delayed speech and feeding issues. We both made the decision to jump on board with APT because this company is the best and only has the best therapist around. We have learned so many tools to help her speak. Her Speech Therapist who works on feeding has taught her how to drink from sippy cups, drink from a straw, blow bubbles, push air out of her mouth and eat some different foods. Not only have these phenomenal women taught De’Zire these valuable skills but they have educated me in ways to help her at home, including techniques with massaging her cheeks and using a Z-Vibe to wake those nerves up.
What improvements have you seen in your child since they started therapy at APT?
De’Zire has gotten stronger, a little more independent, and has built up muscles where she was weak. She has learned how to pull herself up, roll over, sit up on her own, and scoot around on the floor to get to where she needs to be. She’s learned how to stand, cruise side to side and reach for things using her right arm and hand. She follows through with two step commands and has learned how to walk in her Gait Trainer. With her Speech Therapy for language she has learned how to pronounce certain words and listening for certain sounds to identify them. Her focus has improved when learning new techniques to understand what is being taught and using them in every way. Occupational Therapy has really taught her how to process her fear when it comes to loud noises and finding her center of gravity.
What has been your brightest moment along the journey?
My brightest moment for De’Zire was when she crawled for the first time and when she stood up and took 5 steps all by herself. I’ve also loved watching her be able to sit herself up and scoot to where she wanted to go. My brightest moment for myself is when I heard her say Nonna for the first time.
What advice would you give other parents who face similar situations?
Just be patient with your little one. Every child is different and will learn at their own pace. Never give up on the therapist if you do not see progress right away because it will come. Stay focused on your child’s progress because you are their number one teacher. It is okay to have an off day, not only for you but for your child. We may feel defeated at times, exhausted both mentally and physically and may want to cry because nobody else without a special need’s child can relate.
As Nonna mentioned, De’Zire has had a team rally around her to assist her in advancing to her next therapeutic level. Read below as they each tell about the progress they have seen De’Zire make:
How long have you been working with De’Zire and what improvements have you seen?
Lynsey Estinee, OT: I have been working with De’Zire since October 2018. She is independent, determined, and perfectly feisty. I have seen progress from her across all domains. Regarding OT goals, I have seen improvements in her body awareness, oral motor skills, and sensory processing.
Morgan Colyer, SLP: I have been working on expressive and receptive language with this patient since 8/1/18 and have seen great progress! She has begun communicating more and more and her vocabulary continues to grow!
Amie Caple, PT:
I started working with De’Zire about a year and half ago when she was 11mo old. At that time, she was sitting by herself although with frequent propping and falls and was rolling some but had no other means of mobility. She has come so far in our time together. With her multiple co-morbidities, she could have easily been a child that never crawled, stood, or walked; but that would never happen because of her and her grandmother’s motivation and determination! Her progress has been so amazing to watch. I know I am playing a role in her progress, but most of the time, I am simply coaching Nonna, her grandmother, through means to encourage various gross motor tasks and BOOM a few short weeks later, she’s doing it! She is now walking with a gait trainer, standing for longer and longer, and pulling to stand at elevated surfaces. She’s one tough cookie!
Kristen Wheeeler, SLP: De’Zire and I have been working together since May of 2018 and she has progressed so much in trying new foods.
Describe a little about your and De’Zire’s relationship:
Lynsey Estinee: I have enjoyed my time with De’Zire and her family. De’Zire and I have a very playful relationship, which has helped with her progress. She always greets me with the biggest smile and tightest hug that a 2 year old can muster. Her energy and joy are contagious. De’Zire is truly a pleasure to work with and I am proud to be part of her team!
Morgan Colyer: De’Zire is the happiest kiddo ever. She has an infectious smile and gives the best hugs. We always have so much fun at therapy sessions laughing and playing together.
Amie Caple: De’Zire went a long while of crying when she was with me or out of sight of Nonna. I didn’t take it personal, but when she started smiling when seeing me in the lobby or letting me hold her without Nonna’s presence, my two-sizes-too-small heart grew! I always laugh to myself as I am trying to encourage her to perform a task with sing-song talking or silly game play when Nonna will get involved and say, “De’Zire, fix your legs. Put right hand here. Stand up!” and man if she doesn’t straighten up and do it! She’s a small but mighty girl. Her little ringlets and giant smile always puts a smile on my face.
Kristen Wheeler: I see De’Zire for feeding therapy & she is the sweetest little girl. She has made excellent progress in therapy & is eating new foods! De’Zire and I both have curly hair so a lot of the time we will ‘shake our curls’ together to have a little sassy fun!