Intensive Therapy Program at NAPA Center
By Kristen Wilsey
Inspired by other special needs friends and NGLY1 families, like Tai Tai in Hong Kong and the French families of Quentin, Thomas, and Numa, we decided to try an intensive therapy program for Grace in February and March.
In mid-February, after nearly 2 years on the waitlist, we made the trek from our home to Los Angeles to spend 3 weeks at the Neurological and Physical Abilitation Center (NAPA Center). Grace’s team of therapists there were some of the most highly educated, well trained, and compassionate therapists we have encountered. Before we even arrived, the intake coordinator and the administrative team were very helpful and the therapists reviewed dozens of therapy reports and videos of Grace to determine the best set of therapies and goals for her.
Upon arrival, the team and I worked together to set goals for Grace. These top goals included:
- Increased / improved static standing balance. Due to the movement disorder caused by NGLY1 Deficiency, it is difficult for Grace to stand without having to side step or hold onto objects or people.
- Improved ability to transition from the floor to standing without using an object. Due to her poor muscle strength and hypotonia, standing up independently is very challenging for Grace.
- Increase her independent use of the “message” bar on her talker. This is the bar at the top of her device that says the entire phrase Grace is communicating. Nearly all NGLY1 patients are non-verbal, but many use various types of communication devices to get their needs met like 19 year old Emily in Canada, who is our inspiration for Augmentative and Alternative Communication (AAC).
The NAPA center uses various modalities to assist children as young as 3 months old with Cerebral Palsy, genetic diseases, and other medical conditions to attain their individualized, custom goals. For Grace, her sessions involved wearing the neurosuit 2 hours daily. The neurosuit helped Grace with her body alignment, awareness of her body, and increased motor planning. She then went on to have an hour of oral motor therapy and AAC session. Her last hour was dedicated to Cueva Medek Exercises (CME). By far the most challenging of the sessions, CME helped Grace with floor exercises designed to use gravity to elicit automatic reactions, training her body to be able to walk and stand with greater balance. All of these therapies were conducted with the use of Grace’s favorite books, musical instruments, and other fun games and toys that the therapists used so that 4 hours felt like play rather than challenging “work”.
While Grace has undergone traditional physical and occupational therapy since she was 4 months old, starting with PT for her torticollis (a condition causing tight neck muscles); we had never tried 4 hours of daily intensive therapy. The NAPA Center says this kind of therapy can elicit 3-6 months of progress in just 3 weeks as compared to traditional therapy. Now that we have been home for a few weeks, we agree. Grace has made significant strides towards the goals we set. Her traditional therapists at home have noted the improved balance and core strength. She is independently transitioning from the ground to standing with minor assist or prompts and at times with no prompts. Grace’s Speech and Language Pathologists have also noted a huge improvement in communication, even independently touching her message bar 21 times in one therapy session this week.
While there will always be continued goals and areas to improve upon, we would highly recommend that NGLY1 families try an intensive therapy program near them. It’s a big time commitment and time away from home, school, and a regular routine is not easy. That being said, the gains are well worth it. We hope to be able to visit NAPA Center annually or biannually. Please check out the photos and videos below to see more from our February – March 2018 adventure.