Tell us your story.
We didn’t even realize Luke was seizing and I started to second guess myself as the nurses in the ER tried to soothe him, figuring I was just an amateur with a colicky baby. Within a few days, we found out that unfortunately we were not overreacting and were given the diagnosis of tuberous sclerosis (TS). Those words, when given to us on day 2 of our stay, meant nothing to me. But on day 16, when our 5 week old baby was wheeled back to brain surgery, still being bombarded with seizures, the gravity of the diagnosis was beginning to take shape.
Luke’s seizures stopped after surgery for only 10 days. They returned with a tsunami of more than 30+ a day and we were right back in the ICU when the local doctor informed us Luke was not far from being placed in a medically-induced coma and this was to be his life. He told us we needed to accept that there was not much more we could do.
We decided to kindly ask for our discharge papers and traveled to Cincinnati Children’s Hospital’s TS Clinic. They told us the disease was a challenging one, but they were going to do everything they could for Luke. And they did.
But TS doesn’t fight fair, even against the most reputable doctors in the field. We had moments of victory, but the therapies, diets and medications were no match for the growths in Luke’s brain.
The disease was dominating Luke’s body, our family, and my joy. When that hospital told us it was time to consider another surgery, we reluctantly agreed. They referred us to the best surgical team in the world, in Houston, Texas.
The visit concluded that Luke was having about 10 seizures a day and his brain activity, when he was not seizing, was just as chaotic. Luke had been backsliding developmentally and we were running out of time.
We headed back to Houston for surgery with no idea when we would return home or how many surgeries would be needed. And finally, after working with the team and knowing their hearts and their talents and their teamwork, I knew I could trust the process.
After two brain surgeries and a lot of sleepless nights in Houston, the tuber that thought it had won was finally defeated by a laser and a doctor in cowboy boots. We left Houston in December 2016 and Luke has been seizure free since. But things weren’t perfect when we got home. Luke’s brain had been through so much trauma, so even though he was seizure free, the inflammation and irritation left our family worried of the uphill battle ahead. They team at APT did not hesitate and went right to work with Luke with a gentle push to help his brain relearn all it had lost in the chaos of seizures and surgery. Within a few weeks, all our anxieties of regression were gone and our goals became about progressing and helping Luke lead a more independent and safe life.
Since then, life has not molded into the expectations I had before I had a child, but instead has astonished me with a richness of team and community that I never could have planned for. Luke goes to school now and spends five days a week at APT. I think he is the only kid I know that hates the weekend. He loves his family and has recently began to show his appreciation by trying to steal a few kisses.
We all take a broken road to get to the place that changes our life. We stumble and fall and are disappointed at turns we did not intend to take. But this broken road leads us to a place of hope and strength. When we find a team that we can lean on, if only for a moment, it gives us time to breathe and remember who we are. We were chosen to live this life. We were chosen because we will settle for nothing but the very best for our children. We will fight. We will sacrifice. We will question. We were chosen because we will not let these diseases take our hope.
And we were chosen because, no matter how our story unfolds, we will choose joy.
Why did you choose APT for therapy services?
I chose APT because the occupational therapist that we had been working with (and LOVED) for three years, through First Steps, had also seen patients at APT. We were so scared to lose those relationships that we had developed through First Steps, so it was nice to be able to have someone stay on our team and not feel like we were starting over. She was a huge advocate to help Luke get the appropriate service and helped me through the transition, making it so much less scary. Also, when I found out where the office was located, I was excited. SIGS has been a huge part of my life growing up and I loved coming to a place that felt like family.
What improvements have you seen in your child since they started therapy at APT?
Luke’s safety has been our priority in therapy for years now. I now feel more comfortable taking Luke places knowing that he is understanding the world around him and able to safely move in his environment. He is using picture cards and iPad apps to communicate with us and we have seen the skills transition to the home. His frustrations associated with communicated still occur, but we have interventions in place to help him and us know his wants and needs. Luke is also developing independent daily routines. Through occupational therapy, the child that hated things around his mouth now wants to brush his teeth 5 times a day. He is so proud of knowing the routine and has started to love the mirror, too. We have noticed that he is spending time making faces and sounds in the mirror that we have been trying to get him to do for years.
What has been your brightest moment along the journey?
My brightest moment in my journey with Luke has been the successful surgery that stopped Luke’s seizures. It changed our life and gave Luke his life back. However, as we all know, coming back from two brain surgeries is not easy on the brain and the body. The team of Luke’s therapist rallied around us and helped Luke recover from the trauma of surgery. We were really scared when it seemed as though Luke had lost development for a short time after the surgery, but with intense therapy and a lot of rest and snuggles, Luke bounced back and has made huge improvements since then.
What advice would you give other parents who face similar situations?
All I wanted for Luke and our family, aside from the freedom from seizures, was a team around us to help. I knew that having a child with extraordinary needs was never supposed to be ‘fixed’, but I just wanted to feel like I wasn’t doing this alone. I wanted a place to bring my child to interact with others, outside our home and to get me out and involved as well. APT has given our family a home. It feels like a family and it feels like we aren’t in this alone. The therapists brainstorm and advocate for Luke when I am tired or hitting a dead end gives the feeling of community and family that was lacking before. There is something about sitting in the waiting room at APT that makes you feel like you don’t have to apologize or explain anything.
Physical Therapist, Amie Caple, Occupational Therapists, Rachel Nolan & Regan Saxton, and Speech Therapist, Heather Stewart see Luke at APT. We asked them to share a little about their journey with him.
How long have you been working with Luke and what improvements have you seen?
I have been working with Luke for over a year now. He came to me right after his second ablation surgery. When I met him, he was moving and walking but demonstrated very poor body awareness (proprioception and kinesthesia). Over the last year, in physical therapy, we have worked on trunk and pelvic stability, body awareness, balance, and environment negotiation to increase his safety and independence with mobility skills. He has been an incredible child to watch grow and learn and engage in the world around him. He is now able to attend to his surroundings and prevent most falls through awareness of his environment and postural stability. I love to hear that he is able to pick up and carry a gallon of milk at home to let his family know when he wants a drink!
I have been working with Luke for around 6 months. I was able to pick Luke up for his second day a week of Occupational therapy.
I actually initially saw this child when he was enrolled in First steps at 6 months of age. After he aged out of that program at age 3, we began outpatient OT at our SIGS location. He has made nice progress in his fine motor and self care skills. He is interacting more and has a longer attention span. He enjoys trying to do self-care activities more on his own now where he initially showed disinterest. He loves to swing as a reward or as a sensory break.
I have been working with Luke since April 2017. He was one of the first clients I started seeing for speech therapy upon coming to APT. I have seen Luke become more engaged with those around him and take more of an interest in communicating with others. Luke is becoming adept at using a picture exchange communication system to request things he wants and make choices. We have also recently introduced using a communication device in his tablet.
Describe a little about yours and Luke’s relationship.
I adore Luke! I am lucky enough to see him twice a week which are bright spots in my day! He definitely gives me a workout chasing him around but it’s always a fun time. I have seen Luke develop into this sweet little guy who tries to give spontaneous kisses (probably just trying to get out of work), loves to spin and swing, and who grins ear to ear when he’s happy or knows he’s done a good job. The first time Luke followed my instruction to “stop!” demonstrating improved body awareness, I about cried. I am blessed to know Luke and be a part of his journey.
Luke is one of those kids that puts you in a good mood as soon as he walks into the door. He is always on the go and keeps you on your toes. I definitely get my workout when I am with him. His favorite thing to do during our sessions is crawl to the middle of the foam pit and sit to wait for me to climb in after him. He has made so much progress and I love seeing the skills he has accomplished.
We have a pretty special bond. When you’ve seen a child every week since they were an infant, you get to know them and their family really well. I’ve seen this child seizure free and giving kisses but I’ve also held him when he was having multiple seizures and couldn’t use his left side. It’s amazing what can happen in a several year time span and you go alongside the family through that and are their constant. I’m so blessed by the relationships I get to build with my patients and their families. It’s the absolute #1 reason of why I love my job. I learn way more about life and love from them than they learn from me. But I’m grateful and thankful for the opportunity.
It is a delight to see Luke and watch him grow in his abilities. He is always happy to see us and work in Therapy. Luke’s family is a pleasure to work with. They always seek Luke’s best interest and make it easy for us as a team to help Luke.