Never, Never, Never Give Up!

Winston Churchill sure had it right. Some of you may have noticed that Jessica, Judi and I are wearing silver necklaces with a round pendant on them. The pendant has these words engraved on it and we use it as a reminder on those tough days. A lot has transpired since my last post so I will try and update everyone to where we are today. Now that school has ended for the year, I will try and have the real writer in the family (Jess) update the blog more frequently.

We have jumped into the world of neurofeedback (NF) with both feet. The quantitative EEG (QEEG) provided a lot of insight into the current state of Judi's brain. I could go into a lot of technical discussion here (I have become much more knowledgeable of the brain than I ever wanted to be), but here are the basic facts: 1) the right side of her brain showed abnormal power levels at low frequencies, 2) above the low frequencies, ALL sections of her brain showed normal power and 3) there were a significant number of connectivity issues between the right and left side of her brain. The key take away is that all sections of her brain are functional (evidenced by normal power above low frequencies). This would indicate that Judi is a great candidate for NF to correct/improve the issues she has. We have made significant progress in modifying her brain waves at the low frequencies, but have not seen any significant changes physically yet. I could list a bunch of little things that have changed, but we are looking for some major changes soon. The logistics of getting her to the EEG Centre are taking a toll on us. It is about a three hour drive one way to get her there and we are working hard to get her to the point where we can do the training at home. We need to make sure we have the training protocol "dialed in" before we do that. Remember that we are impacting her brain waves by this training and if you can do good, you can also do harm.

Physical therapy continues to go well and Judi is getting stronger every day. The most critical issue is still her neck and her ability to hold her head up on her on. We are performing electrical stimulation on her neck muscles and her left side arm/leg at home. Although it consumes a considerable amount of our home time, it is clearly having a positive impact. Once we have the neck issue corrected, we will be ready to get her on the treadmill (supported obviously) and start working on walking.

Speech continues to show very slow improvement. She is very vocal in her sleep and is obviously trying to put words together. I am positive that it is just a matter of time. NF could help this issue as well.

Her cognition continues to improve. She is VERY aware of what is going on around her and understands even subtle issues. I am sure she is struggling to come back to us and I am sure knowing Judi the way I do, she is very frustrated as well. Again, this is a primary focus of the NF program.

We are in the process of recovering from the loss of the caregiver that has been with us since Judi came home from the hospital. Due to the need to care for a family member, she had to resign from her position. This was a huge setback for me. She did an awesome job and I trusted her to care for Judi with the same tenacity and compassion as I do. We have found a replacement that I believe will do an equally good job, but it will take several months to bring her to the point that Judi gets the same care/therapy she had been receiving. I am currently gapping that effort as she comes up to speed.

I think that is all the big stuff for now. Please continue to remember us in your prayers. I encourage you to come and see her if you are so inclined. She enjoys visitors and I am sure that it means more to her than any of us realize to see friendly faces and revisit memories associated with them. I am also sure she is glad to see/hear someone other than me.

Steve

One Year Later

Have you ever completed a questionnaire that asked you the following question?

“Where do you see yourself in five years?”

What a ridiculous question! With all the uncontrollable factors at play in our lives, the whims and fancies that change our directions every minute of every day, who could possibly give an answer to that question? I can certainly tell you that five years ago, or a year and a month ago, I could not have even come close to predicting where I am now.

One year ago, our lives were changed forever. A split second saw the end of a chapter in our lives and began a new one whose ending we could not even begin to guess. In the space of an hour on April 26, 2009, I went from worrying about finding a job for the new school year to wondering if someone was about to walk out of the trauma unit doors and begin a conversation with “I’m very sorry.”

At that moment, and in the days that followed, the thought of ‘a year from now’ did not even begin to enter my mind. As those early days passed, we thought in days, and weeks. We wanted to see IV drips stopped in so many days, or tubes pulled in this many weeks. A year was so far away that surely all of this would be finished by then.

But this has turned into a longer chapter than we had originally imagined. At the beginning, we could not even imagine how long it would take, and how slow the progress would be.Each day we look for the signs that Mom continues to get better. Some days it’s easy to be optimistic, and some days that glass is just half empty. But by little steps and inches, she gets better.

In some ways, it’s like what I imagine having a baby must be like. (Hear me out on this one.) You look for milestones – that first laugh, the first smile, the first words. In a way, Mom has been reborn. She is learning to do everything again. The first time she laughed, it was cause for celebration. Now she laughs and smiles with us every day. The first time she was able to do “Yes/No” responses, it was cause for celebration. Now she can answer questions to help make sure she gets what she needs at any given time. Everyone who sees her from the medical perspective sees phenomenal progress and improvement. We are always looking forward, pushing her gently but surely toward toward another step.

This is not the story we wanted to live, but one year ago we learned that sometimes life just doesn’t go according to plan. But we have come so far in one year; where will we be one year from now?