Today I attended a seminar hosted by Brain STEPS. The Brain Injury Association of Pennsylvania, under contract from the PA Department of Health and partnered with the PA Department of Education, has created the Child & Adolescent Brain Injury
School Re-entry Program called Brain STEPS (Strategies Teaching Educators, Parents, and Students). Brain STEPS is working to make sure that those who provide educational support to children with brain injury have a good understanding of the effects of the injury, the resulting challenges, and supports and interventions that will help these students achieve educational success through graduation.
The seminar was titled Brain Injury ~ Concussion & Beyond. It was fascinating to hear more about the brain, which parts of the brain control our emotions, movement etc. The seminar addressed strategic approaches that we can try to enhance the current therapy programs we are utilizing. We are extremely fortunate to have the therapy team currently working with Corey. It is also obvious that communication between the team members for clinical (insurance), educational (school district) PT/OT/ST and Teachers (or Cognitive Therapy) is a critical component to the TBI recovery process. It is also imperative that we educate our nursing staff with the affects of TBI. One example required to be explained is impulsivity which is often misunderstood as a behavioral issue rather than the residual effect of damage to the frontal lobe. I mention this because today’s nurse had an extremely difficult day with Corey while I was attending the seminar.
The damage to Corey’s brain will not heal in the manner to which we understand “healing”. TBI is not a broken bone that sets within 6 weeks. It also does not present or recover in the same fashion for multiple individuals. Each person’s injury is unique as is their recovery. What works for one will not work for another; it’s a life long process.
We all have 180,000 pathways in our brain to learn and absorb new information. We only use 53,000 pathways in our lifetime. Picture a road map in your mind. It has main roads and back roads all interconnected. Now imagine a severe earthquake. The roads are not only blocked, they are torn and disconnected. Corey had a diffused axonal injury. That means that all the pathways (or roads) were severed throughout the entire brain not just one area. As she recovers, the brain is remapping new routes. We see that remapping as regaining the ability to speak, swallow, develop muscle movement etc., the brain is rerouting the messages; finding new roads to get to the new destination.
What is fascinating is when the brain shows partial connections. For instance, Cognitively Corey can communicate with written answers but she can not recognize the letters of the alphabet. This is just one example of what we are trying to learn and work with as we try to help Corey regain every aspect of her life.
Corey’s jetlag lessened a bit today but she is still showing signs of fatigue and demonstrating extreme agitation due to short term memory issues; another side effect of TBI. This is especially difficult when it comes to her eating.
She is enjoying most everything we try but unfortunately she has no memory of when she eats nor does she seem to be satiated. She is constantly asking to be fed stating, “I’m hungry”. When we try to explain that she’s already eaten, or redirect to distract her, she gets extremely frustrated yelling “No, I want food!” and then will flail her arms and kicks her legs. (I call this stage the terrible two’s).
We have to be very careful of the quantity of food she receives. She hasn’t eaten real food in almost 18 months. We can’t just let her jump into a full course meal. In addition, she is not mobile enough to counter balance the increased calorie count with exercise. We are definitely moving into a new phase of our journey…it’s not a smooth transition.
This being said today Corey hit a new milestone. Instead of pureeing Mac & cheese, she ate the noodles as is (the noodles were overcooked rather than al dente). Diane observed her chewing and swallowing. She was pleased to see Corey’s control and has now approved us to try soft (mushy) foods…break out the vegetables!
Corey everyday is filled with new challenges, detours and deadends. I read a passage tonight I want to share with you.
Achievement often appears easy in hindsight and from the outside looking in. Yet significant achievement is not easy and is not without considerable problems and frustrations ~ Achievement is done when no one is paying attention. Those who achieve, do the work even though it is difficult, demanding, tedious and far from glamorous ~ Working through difficult challenges is, in fact, what creates achievement ~ It’s not extraordinary talent that distinguishes achievers, but rather an extraordinary level of commitment to getting the work done. ~ Ralph Marston
This is what I am most grateful for Corey; the level of commitment from you and our support team. You are working hard each day and it is difficult, demanding and tedious. Your frustration is warranted. What you do day in and day out is just plan hard. But don’t forget we are here, committed to working with you; providing what ever we can to help facilitate your ability to remap and reroute your development. Keep working honey. Don’t forget what you told me…it’s a “matter of time”, xoxo