A Test of Patience at the Gait Lab
It was finally time for our long-awaited appointment at Gillette in the Gait Lab and Movement Disorder Clinic. Caleb’s Neurologist recommended we do this back in the spring to have a baseline for how he moves and allow multiple clinicians to weigh in on his treatment plan.
My mom (Minnie) headed over early to watch Duncan while Dan and I committed our day to Caleb at Gillette. It was going to be a long day as we had to check in at the Gait Lab at 9 am and had our Movement Disorder Clinic at 1 pm. However, I had spent quite a bit of time organizing our all-day doctor bag (which I feel I’ve pretty much mastered at this point) to make it a success. Except it turns out that Caleb had a different plan. The good news is that at the end of the day, I considered it a success. The bad news is, we went through many tears to get there.
The Gait Lab is cool, like really cool. They use top of the line computer technology to capture both voluntary and non-voluntary movement. This can then be documented for how things change over years as well as shared with other clinicians to help in any given treatment plan. But Caleb didn’t think it was cool at all. I watched him act completely out of character for an extended period of time while Dan and I tried to remedy the situation. All I could think about are the logistics I had set up to make this a success. My mom had Duncan for the day so Dan could be with us, I took the day off work, we had our 1 pm appointment with a team of clinicians that needed this video to help in their guidance and not to mention we have waited nearly 6 months for this day. But Caleb didn’t care nor did he realize any of that. He laid on the ground kicking and screaming without clothes then hid in a corner and cried. I think he thought it would be fun when he spotted some balls, but when he was asked to sit on a chair in the middle of a huge white room with cameras all on him, he lost it. And then minutes later, I lost it too.
It didn’t take long for everyone to agree it’s time to call it quits and to deem this part of the appointment unsuccessful. Low and behold, Caleb was as happy as could be when we walked out of that room, as if nothing even phased him. A gentle reminder to us that he is only 3 years old. Dan comforted me as we sat in a hall way and discussed next steps. I decided I needed a kick ass cup of coffee before I could make any decisions. Off to Quixotic, one of our favorite places to get coffee, and then back home. On the car ride home I kept reminding myself that no matter the outcome, at least I got a day with a few of my favorite people and what a blessing that is! That helped, but the coffee helped too.
Just a few minutes after we got home, Minnie walked in the door with Duncan. They had been at the library playing and taking part in multiple story hours. We explained we needed help and that we wanted to do a role change. She gladly accepted. So Minnie and I headed back to Gillette with Caleb. We know that Minnie has a way with her grandbabies.
To be honest, I wasn’t sure if there was even a point to our 1:00 appointment since they weren’t able to capture Caleb’s gait on video, but I was showing up regardless knowing they had a team of clinician’s ready to see Caleb. Caleb played on the video screen in the waiting area until they needed him for height/weight/vitals. As I pulled him away, he screamed at the top of his lungs and then he bit me. For real, chomped down on my arm. But I knew I had to hold it together so I pretended like it didn’t happen and carried on. I think he sensed my calmness because then he decided to pull it together. Good job me. Good job Caleb.
I was completely mistaken about if the 1:00 would be worth it. We had representatives from Neurosurgery, PM&R and Neurology. They had the MRI with the areas of brain damage up on the computer, they talked with me, they did a physical assessment and they spent time with Caleb and observed him playing, walking and running. Finally, they exited the room to agree on the plan. Minnie was pivotal in this success distracting Caleb from the pushes and pulls during the physical assessment. It was team based care in the finest form.
The treatment plan is as follows:
Physical therapy (immediate need)
A substantial increase brace wear – 18 hours/day (immediate need)
Injection of muscle relaxer in the right leg followed by a series of casts (not an immediate need)
We have decided to hold off on the injections for a few reasons.
They did not suggest it was an immediate need.
Caleb can get around with his current gait.
The procedure followed by 6 weeks of casting doesn’t sound awesome for us or him.
They explained that the benefit of an injection is that it wears off 100% of the time (meaning nothing about it is permanent) but the downfall is that if it works, it still wears off 100% of the time (meaning you find yourself going through that process as soon as it wears off). So we will continue to watch his gait as he grows and if anything substantially changes or gets worse in any way, then we will re-evaluate the injection process.
We left happy. Premium care for my sweet baby Caleb and a satisfied mom with some answers and a plan.
From here we returned to the Gait Lab for round 2. I was welcomed with a hug by the therapist and I explained that I have lowered my expectations and let’s just see what happens. Well it was a success, a total success. Although he clearly remembered the room and still didn’t like the analogy that he got to “make his own movie.” He followed directions and was in great spirits. These videos would now be sent to his team, but it is unlikely it would result in any different plan given the time they had already spent with him. But now we had his gait documented at a point in time that we can repeat as he grows. We left and we were still happy. A complete 180 from our attempt in the morning. Another gentle reminder that Caleb is only 3 years old.
They fit us in at Adaptive Technology (Abby deserves a shout out) to make some adjustments to his brace and we were on our way. We walked in the house about 4:00. Minnie, Dan and I cracked a beer and had much to celebrate. Cheers to Caleb’s providers. Cheers to Caleb’s family. Cheers to all of Caleb’s supporters.
