Tell us your child’s story:
Emily was born prematurely after I had severe preeclampsia early in my third trimester. Despite her premature birth, she did really well in the NICU and went home two weeks earlier than anticipated. We have since learned that she has a chromosomal microdeletion causing hypotonia, Marfan syndrome, and a very rare (1/28 million incidence) genetic mutation (STAT-1 gain of function mutation) causing severe immune dysregulation. All of these are genetic disorders, but the last one is a completely new mutation that neither me nor her father have (and they didn’t know to start looking for it until she nearly died of a known strain of coronavirus in early 2019 – this was not COVID-19, but a different strain that normally does not cause severe illness in healthy humans). We are still learning more about our child’s conditions, but she has several major medical challenges that require close observation and management.
She began physical, occupational, and speech therapy through Early Intervention shortly after the silent aspiration was found. Though she is ahead cognitively and she showed us she was beginning to read easy words at two years old, she was severely delayed in gross motor, fine motor, and speech skills.
Why did you choose APT for therapy services?
We wanted to find an outpatient therapy provider rather than going through the school system. Her Early Intervention physical therapist recommended looking into APT, and we did research of local providers before deciding. Another big plus was the availability of teletherapy services, which is crucial to keep her safe during the pandemic.
What improvements have you seen in your child since they started therapy at APT?
Emily has improved leaps and bounds since starting with APT! When she started, she really couldn’t walk unassisted at all and had to rely heavily on her walker. Her balance was severely affected, and she couldn’t dance and play like other children her age. Since starting physical therapy, she can now navigate so much more on her own! She can climb on and off the couch, dance to music (which she loves to do), walk through the house without her walker with only a little help, either from one of her parents or the furniture/walls, throw a ball at a target, and even navigate small steps. Before starting with APT, she could do absolutely none of this. With speech, she has learned so many new signs to communicate with us, and she is beginning to make new sounds we have never heard her make before. Her progress since starting with APT has accelerated, and it’s been a real joy to see. We spent over two years in Early Intervention and made some good progress, but she’s now progressing at least twice as quickly with APT.
What has been your brightest moment along the journey?
I think it’s a tie between the first time I saw her walk across the entire living room unassisted, taking steps forward rather than to the side, as she always tried to do before due to a lack of confidence. It happened during a therapy session, and it was completely unexpected. The other is the first time she finally started opening up during speech therapy and working to make the sounds that her speech therapist was helping her with. With the help of speech therapy, we finally got her to engage and start to work on those sounds by making it into a game that she found fun.
What advice would you give other parents who face similar situations?
It can be extremely overwhelming (and heartbreaking, at times) to see your child struggle so much, especially if they are medically complex, like Emily is. We’re still figuring her out, and we probably will be figuring her out for the rest of her childhood! My advice would be never to give up hope and not to underestimate your child. Children with these challenges often end up developing the strongest will and tenacity that you’ve ever seen in children, and there’s not a day that goes by that Emily doesn’t impress me with her pure will and stubbornness to improve. Do everything you can to make therapy fun for your child, allow them to show you what they can do and how amazing they are, and always hold on to hope and optimism because these kids will wow you every single day if you’re paying attention and you give them the space to do so! Also, if something is not working, either in daily life or in therapy, talk to your child’s therapists and brainstorm to see what solutions you can come up with.
Any specific comments on using Teletherapy vs. in-person, face-to-face therapy sessions?
Teletherapy has been essential for us. We haven’t actually met any of Emily’s therapists at APT in person yet! With her immune dysregulation, it is very dangerous for her to be out in this pandemic unless absolutely necessary. We break quarantine when we must, for crucial doctors appointments and such, but it has been a real blessing to be able to do teletherapy and still see her progress so quickly and make such huge strides! We aren’t able to compare it to face-to-face therapy yet, but I haven’t been disappointed with her progress at all in teletherapy. We are so grateful to have this option so that we can continue to work with her and see her make such incredible progress while keeping her safe until this pandemic is under control.
Physical Therapist, Kerry Verme sees Emily via Teletherapy. We asked Kerry to share a little about their journey with her.
How long have you been working with Emily and what improvements you have seen?
Kerry: I have been working with Emily and her parents for nearly 7 months. She transitioned out of the First Steps program with a different provider and began Teletherapy PT through APT with me. Emily has shown significant progress in the past 6 months with transitional movements, learning to navigate getting on/off furniture and play toys more independently. She is working very hard with motor planning and coordination skills as she has increased strength and balance. Emily was very unsteady with very poor balance reactions skills making it necessary for her parents to be by her side and giving her assistance with most movements for transitioning. However, she now needs supervision and intermittent assistance when her balance is altered. She is using her walker less and enjoys a hand hold from her parents or the nearby furniture or wall instead. It has been so enjoyable to watch her play skills as a 3 year old develop to include ball play, dancing, and block paly in various positions.
Describe a little about your and Emily’s relationship.
Kerry: Emily, her parents and I make a great team! Teletherapy is most effective when as many of the family members caring for the child can participate. Emily’s parents are very hands on and do extremely well with modifying activities as I explain and provide a very positive environment for Emily to complete her sessions in. Emily is a very receptive child who has such great engagement with me through the computer screen, using gestures and sign language to communicate with me. She is very determined during our sessions and rarely enjoys my recommended rest time of relaxing for a couple minutes after all the hard work of standing, strengthening and balance activities. Emily has such a beautiful smile and brings many smiles to my face during our sessions. I’m so very proud of our team!