May Patient Spotlight: Grace!

Grace was born 5 weeks early due to a PFO of the heart, hydronephrosis, and hypothermia. She spent two weeks in the NICU before she was able to come home, but otherwise was in good health.  She was failing to meet milestones as she got older, so she went through many medical procedures and testing to find out the root cause of her symptoms, but most of the tests came back normal.  She started physical therapy and occupational therapy through First Steps in October of 2010 to help meet her milestones.

Tell us your story.

Grace started walking at 18 months old with the help of her awesome physical therapist. In March of 2011, her neurologist ran a genetic panel and they found she has a complex rearrangement of chromosomes 7 & 11, and that this particular anomaly has never been seen before. We then switched her specialist care up to Cincinnati Children’s where she was followed by a geneticist, neurologist, and orthopedic surgeon to monitor her progress. She attended Sproutlings Pediatric Daycare, which is where we were introduced to APT on high recommendation. She has been seeing Angela for speech and Morgan for OT for several years now and is also now seeing Suzanne for additional OT. She still is the only person diagnosed with this particular genetic disorder, has several medical issues and pretty severe developmental/cognitive delays that she’s being followed for now, but is a thriving 7 year old. Grace is now a first grader at Pitt Academy.

Why did you choose APT for therapy services?

APT became highly recommended by the staff at Sproutlings and by many of my peers. The first time we met her therapists there, I knew they would be a perfect fit for Grace. We love that they are able to meet her at school and that they have locations close to home.

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

She’s made massive improvements since she’s started with APT. Grace didn’t speak  until she was past 4 years old and mostly grunted to communicate and now she is talking nonstop and her speech is getting clearer by the day which is more than we could’ve ever hoped for. Also her fine motor skills have made a tremendous improvement from where she was a few years ago. She is able to assist me with dressing her, she’s able to write her name, and feed herself. The improvement has been overwhelming and the relationship and trust that she has with her therapists is invaluable.

What has been your brightest moment along the journey?

Probably Grace speaking has been the best! She is the funniest and wittiest kid I know and we always knew that she was, but she was unable to express it. Now that she can, everyone can truly see her personality shine through. Even after everything she is been through, she is always resilient, positive, and such a happy soul.

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

Enjoy the moments: They go by way too fast so soak in all of the experiences.

Celebrate the achievements: They work so hard to reach small goals and take time to celebrate all of the achievements big or small.

 Listen to your gut: You have to be your child’s advocate because no one knows your child like you do. Don’t be afraid to speak up or disagree.

Speech Therapist, Angela Baker, and Occupational Therapist, Morgan McDonald, see Grace at APT. We asked them to share a little about their journey with her.

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

Angela:

I have been working with Grace for over 2 years. She was one of the first patients I saw when I began working for APT. Grace has made tremendous progress during this time. When Grace and I first started working together she typically used 2-3 word phrases. Now she is speaking in full sentences and telling stories! We are working now to perfect her grammar. I have seen such a change in her social skills since she started school, and she has become an excellent conversationalist. While she still has speech sounds that are hard for her to make, her overall intelligibility has improved as well.

Morgan:

I’ve worked with Grace for 3.5 years, since she was 4 1/2 years old. In that time this once shy girl has grown into a spunky little firecracker! She was unable to complete more than 2 minutes of fine motor work before getting tired when playing at school, and couldn’t really keep up with her peers on the playground. Now Grace has become so much more active and now it’s hard for us to keep up with her! It has been so great watching her grow in so many areas. We’ve worked on getting dressed, fine motor skills, motor planning, gross motor coordination, executive functioning, and social skills. She has improved in all of these occupational therapy areas and more. Grace is fearless, always enthusiastic, and such a hard worker! I love to see her face light up when she’s defeated another challenge and met another goal.

Describe a little about yours and Grace’s relationship.

Angela:

Since I have been seeing Grace for a while, we have definitely developed a great relationship. I have been able to see her at multiple locations for therapy but I will never forget how excited she was the first time she saw me at her new school! She has such a sweet (and a little bit sassy) personality, and I truly look forward to our sessions. She is also a hard worker, she rarely gets discouraged and she is always willing to try new things with me even if it seems silly or too hard.

Morgan:

Grace is such a sweet girl with such a kind heart. She used to sit back and go with the flow but now she generally takes charge and pretty much runs the sessions! She is seriously one of the coolest kids I’ve ever met. She is such a joy and it has been such a blessing to be able to work with Grace and her family. Her parents are so supportive and have played such a huge role in why Grace has come so far! They are always asking questions and are willing and eager to help her practice her new skills at home. Everyone who meets Grace will tell you her spirited personality and warm-hearted smile is contagious.

Comments

  1. Donna Stephenson says:

    Great history of my sweet little cousin. You have done excellent therapies with her and her parents, Bobby and Lindsey Parker are the best! They always go the extra mile for her. Thank you again for all your professional guidance. Gracie is a beacon of sunshine. Aunt Donna

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