Aspen & Tenley Balthazor
Aspen wears many hats! She is a wife, mother, physical therapist and founder/owner of Joy of Movement, LLC in Wichita, KS. In this podcast she narrates the story of the early arrival of her twins, her daughter Tenley's diagnosis and the subsequent path that lead from diagnosis, botox, baclofen and ultimately a surgery called selective dorsal rhizotomy.
Disclaimer: As always the material on this podcast and blog is intended for educational purposes and is not a substitute for consultation with your medical provider.
Aspen & Tenley, 2019, Photo Credit: Tanna Dickey
My name is Aspen Balthazor. I am a Doctor of Physical Therapy in Wichita, KS. I specialize in working with people with neurological diseases/disorders as well as the geriatric population to age in place safely. I have 9-year-old twins Tenley and Camden and my daughter Tenley has Cerebral Palsy. I feel honored to have been asked by Marsh to share our journey with our unique situation of Tenley having CP and me now being her full time Physical Therapist.
Tenley in NICU
Tenley entered this world 11 weeks early to save 3 lives, her twin brother Camden, myself and her own. On November 1st, 2010, the ultrasound tech was taking much longer than usual to get the images Dr. Kuhlmann requested daily. Within minutes of returning to my hospital room and climbing into bed, a nurse entered stating “We are headed to labor and delivery”. Within the hour of arriving to labor and delivery, Dr. Kuhlmann entered the room stating, “Today is going to be Tenley and Camden’s birthday. We have 24 hours to get Camden out and keep all three of you safe”. Dr. Kuhlmann then informed us the umbilical cord flow had changed direction from Camden and was flowing back to me.
Aspen with her daughter Tenley
Camden had a rough 8 weeks in the NICU following their delivery at 29 weeks. Tenley, on the other hand, sailed through her 6-week NICU stay, being labeled by Dr. Dorn as the “NICU MVP”. Dr. Dorn said, “if Tenley had a jersey, we would hang it on the wall”. As Tenley approached 8 months old, we noticed she was not reaching her milestones. At that time, we were told by her pediatrician not to compare Tenley to Camden at this age and he informed us she was fine. I however knew her body felt different and could see the struggles she was facing daily trying to keep up with Camden. Fast forward to September 30th, 2014 we received MRI confirmation of damage in Tenley’s brain leading to the diagnosis of “Spastic Diplegia Cerebral Palsy”.
Treatment to date: Physical Therapy for 7 years, 2 trials of oral baclofen, hippotherapy for 3 years, first and only botox injections September 2014, Selective Dorsal Rhizotomy with Dr. T.S. Park February of 2015, PERCS for gastrocnemius release December of 2015, Anterior Tibialis Tendon Transfer with Achilles PERCS (lengthening) May of 2018 with Dr. Matthew Dobbs.
SDR in 2014
Therapy has been amazing for Tenley. In our opinion, Tenley has had the best therapists and we have a supportive, amazing family. Without everyone’s joint effort, Tenley would not be as independent as she is. Tenley’s early years of Physical Therapy proved to be challenging with me also being a Physical Therapist. I was constantly assessing and correcting her movement patterns, and this began to build a wedge between us. Tenley did not always like for me to be present during her treatment sessions and would take out her frustrations on me. I have been hit in the face, spit on, and bitten by what the rest of the world knows as our sweet Tenley. Tenley’s therapist at the time recommended I stay in the waiting room for sessions from then on. This was the moment when I began to realize, during this phase of our lives, I needed to be “mom” as much as possible and not her Physical Therapist.
As Tenley grew older, we faced surgeries to improve her mobility, pain, and alignment. We faced these procedures and hospital stays as a family. I would stay in the hospital room with her overnight, daddy would come in the morning to take over and allow me some rest. My parents often traveled with us for support and my in-laws held down the fort back home caring for Tenley’s twin brother Camden. This is the time things began to change and Tenley began to trust in me as mom and Physical Therapist.
My first advice to others from our journey is to have friends or family available to help and do not be afraid to ask for help. If you do not have family or friends nearby then search for local support groups or ask your doctors and therapists for guidance to find some. My mother has been a lifeline for me since I became pregnant with always answering my phone calls, listening to my fears, tears and joys and always having the ability to make it better. The best advice my mother has given me along the way was “Aspen, you are going to have to quit feeling sorry for yourself and Tenley. Sitting here crying for hours is not going to change anything. It is ok for a little bit but then you need to get up and get moving for Tenley and your family”.
My mother was oh so right! Little did I know at that time that I appeared to be fine and functioning, but I was slowly falling into a deep depression. People on the outside looking in had no idea. My close friends probably had ideas as I confided in them at times, but honestly looking back on it now I am not sure they realized how bad it was. I am not sure I realized how bad it was until I can now reflect on it. I functioned because I did not have any other choice. My husband is a police officer and his schedule is never predictable. I was the only constant for our family. Throw on top being a Physical Therapist with the mindset I should be able to “fix” Tenley and this spiraled me into dark places that progressed for several years. All during this time, I finally became Tenley’s main Physical Therapist and she began enjoying “working out with mommy” seeing my love and dedication to help her vs just correct her. We made the workouts fun, never the same, and we found the best flow was for me to pick an exercise then Tenley would choose one. This allowed Tenley to feel she had an active role in her treatment, and this has worked well for us.
Tenley, 2019, Photo: Tanna Dickey
We have traveled to California and Texas for months at a time to have Tenley participate in intensive therapy sessions lasting 2-3 hours per day. We transformed our basement storage room into our gym space. We had fundraisers to help fund trips for therapy as well as fund items needed for her home gym. During this time, I realized I needed professional help for the depression and anxiety I was facing. It was beginning to take a toll on our family. I can not begin to describe the blessing my therapist and doctors have been over the last few years. So, the next advice I have, is to seek professional help for yourself when you need it. It really is true that if you do not take care of yourself, you will not be able to care for anyone else.
Tenley is now 9 years old and continues to love the phrase she has been saying since she was 2 “I will do it myself!”. The drive for independence this girl has is phenomenal. We have our weeks where we are very consistent with therapy at home then we go weeks without being consistent. Our best way to stay motivated is a dry erase calendar hanging on the wall in our gym. Tenley makes a check mark and notes her duration exercised after each session. Tenley then makes a goal for the end of the week she wants to achieve. I love seeing her face when she knocks out that goal! I no longer stress over missed workouts. Several years ago, this used to eat me alive. However, I have finally accepted the fact that I will never “fix” her movement patterns. We can improve strength, balance, and movement patterns giving her the best quality of independent life. But I am not willing to sacrifice our relationship or her years just being a carefree little girl at the expense of making sure we include one more workout.
Tenley on Reba!
Tenley’s passion is horses and she attends riding lessons 1-2x/week. This past fall she participated in her first ever rodeo season and brought home some ribbons! So, my last bit of advice is to find balance. Find what your child has a passion for and allow that to shine. Know it is ok to let that take the place of a workout or two and do not beat yourself up about it. Horse riding lessons and rodeos take away from time we could be focused on workouts at home, however the joy we see on her face watching her accomplish the goals she sets in her passion is worth it!
“For I know the plans I have for you declares the Lord, plans to prosper you and not harm you, plans to give you hope and a future.” Jeremiah 29:11
“My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake I delight in weakness, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1: 2-4