Good morning everyone. I wanted to take a few minutes this morning to update you on some of the latest news that we have received with Caleb. The news at first was scary to us as it stoked up fears of things that we had been told very early on when Caleb was first injured. We have since learned however that what we had initially feared was not what the therapists were informing us about. After Caleb’s initial injury we were told that brain trauma patients follow a predicable path of recovery that generally has the patient seeing an increase in abilities, as the patient starts rehabilitation. This initial stage, as we were told, can be up to a year and this is the time when you will normally see the patient gain back some or a lot of what they lost rather quickly. After this stage comes another stage where things tend to slow down. The brain is unable to absorb and process the information like it used to and, because of the injury, tasks become gradually harder. Learning slows down and recovery at that point becomes more gradual.
Yesterday we were told that Caleb is now entering this second phase of his recovery—that his ability to regain things he lost is slowing, but is still progressing. Again, as we were told, this is a natural part of brain trauma. Some of the changes that we were told we need to make have to do with the way we have been doing therapy with Caleb for the last 7 months. Whereas before we had a very structured evening routine of therapy where we would work 2, 3, sometimes more hours of therapy, Caleb is now increasingly becoming unable to be attentive for that long, and he is now starting to push back, be resentful, cry, and not want to do therapy. The therapists have said that with where he is now we need to treat him more like an average 3 year old, in the sense of just letting him play and have fun, and incorporate therapy exercises where we see we can and as he can tolerate them. The structured evenings with lots of therapy was good for the initial stage as Caleb’s brain was rapidly learning and wanting to learn more, but now because his brain ability has slowed, it is causing him increased frustration and anxiety. So now as we change our therapy routine (which will no longer look like a routine), we have been told that, one or two completed reps for a therapy is a success. Learning for Caleb at this point will not be as rapid as it has been in the past. It will be more gradual. Tiffany and I are making a change beginning today to stop “therapy” as our family has known it for the last number of months. We are now seeking to have a more informal, fun, family time in the evenings where therapy can happen, but it is not noticed as such.
As we have decided to structure it, we have cut back on the number of therapy “sessions” with Caleb to 4 nights per week, instead of 7. We’ll work with him on the different types of therapy on the days when he doesn’t have that therapy at Vanderbilt. He’ll still go to therapy at Vanderbilt 3 times per week and still have a session of vision and speech. We in turn will look for more informal ways to integrate physical, occupational, vision, and speech as well as music into our day to day routine, always keeping an eye out on the current goals that the therapists have set.
As I said it was hard at first hearing this news as another of the things we were told early on is that brain trauma patients can plateau at any stage. In other words some patients increase in their functionality, regain back some of what they lost, and then they taper off and plateau never regaining much more. We have asked the therapists at Vanderbilt their opinions on this and all have stated that they do not believe Caleb is stopping with his progress. They have said that he is very smart, loves to learn, loves to play, and is a very happy little boy. His challenges still stem from the brain injury. Like any normal 3 year old his attention span is low, and with Caleb’s brain injury, they have told us it is even lower. His vision is still deficient but improving. His balance is still off but getting better.
Change is always hard and for the last 7 months Tiffany and I have felt like we were on a train going full speed—being relentless about therapy every night so as to make sure Caleb gets back as much as possible for the first year. As textbook becomes reality we find that not all things go by the book. We have met many families who have not seen much progress in the first year, only to have lots of progress in the second, third, or more years. So all in all, I now no longer see the news and something to be alarmed about. I don’t believe Caleb is plateauing. He still loves to learn; but now his learning will take a new nature. It’s time to change. We’ll slow down, make it less informal, do less, become more focused on what we do, and most of all work to give Caleb as happy and normal of a 3 year old life as possible. That, in the long run, will be the very best therapy for our little guy. God has been very good to us over the last few months. It is hard to believe that all of this began 8 months ago. Over the course of the last near year our family has learned so many valuable lessons, about faith, life, love, and family. All of it would never have been possible without you and all the thousands who have prayed for our son. We ask that you still mention Caleb in your prayers. God bless you all. Blessings.