Monday, April 12, 2010

Blazing New Ground

A lot has gone on in the last couple of weeks. It is hard for me to believe that it has been almost a year since this journey began. I'll try and do a special blog entry on or near the anniversary of Judi's injury (April 26) to give everyone a clear picture of where we are today and what the near future holds (as I know it today).

Judi had her 3 month follow up with her neurosurgeon last week and a CT scan of her head. Everything looked good and her shunt is performing well as evidenced by the size of the ventricles in the brain. The only real concern we have associated with the multiple head surgeries are two small areas on her head where she has divots (my term) in her skull where bone has not filled in. It is not uncommon for this to occur, but the shunt causes skin to be pulled into these areas tighter than would occur under normal conditions. This establishes the conditions for skin breakdown to occur. If any significant skin break down occurs in these areas it could result in fluid leakage from her brain and that is a medical emergency for her. I have been watching these areas like a hawk from day one and we don't believe this will be a problem in the long haul.

We began neurofeedback therapy last week as well. Judi handled the three hour trip well. Thank goodness for the DVD player in the van!! She slept for about half the ride and watched videos for the other half. I was able to get a lot of insight on what is going on with Judi's brain function during the evaluation activities and the first feedback session. During the feedback session, there is a real time localized EEG running that monitors her brain's response to the video input. We were able to quickly identify the frequency where Judi's brain is exhibiting "slowing." The neurofeedback process essentially identifies these frequencies and then begins to exercise the brain to improve response in this range. This is where I struggle a bit with what is reality and what is just a good sales pitch. The line being that neurofeedback is an ideal therapy for this type of brain issue. The exact mechanism by which neurofeedback works is a bit "fuzzy" at best and my engineering thought process struggles a lot with a lack of direct "cause and effect" data. There is a lot of evidence that the process can produce significant improvement, so we are going to continue for a while and monitor Judi's response. If it works, I don't care what the true mechanism is. I'll keep you updated as we get more exposure to the process.

Last weekend Judi got her first real haircut since her accident. She thoroughly enjoyed the experience and it was great to see her relax and smile as they shampooed her hair and pampered her. I asked her who did a better shampoo job, the girls or me - she busted me and immediately pointed to the girls!!!! We all had a big laugh and it was a very positive experience for all of us. I plan to get her to the manicure/pedicure next. She always loved this in the past and was always her treat for herself. I asked her if she was interested and she smiled and signaled yes.

We have a neurologist appointment this Friday for followup as well. I have already talked with the Dr and the plan is to evaluate where we should keep Judi on the anti-seizure medication. As you may recall, we had placed her on the medication to see if she was having some low level seizures that we were not seeing external symptoms of. I have not seen any positive change that would be attributed to this potential issue and the reality is that the drug has a slowing effect on the brain (that's how the seizures are controlled). Judi has shown significant cognitive improvement over the last couple of weeks and I would like to eliminate the impact of the drug to see if she improves more. Unfortunately, seizures often occur when anti-seizure medication dose levels are changed. We'll have to be ready.

Tomorrow (4/15) is Judi's birthday. I have been picking on her for a couple of weeks about getting old and she always gets a laugh out of it. I will admit that it will be a bit of a struggle for me to remain positive as we celebrate her birthday. Judi turned 50 last year and we had a lot of fun celebrating it. I have a lot of very vivid and fun memories of where we were last year at this time. We made a lot of plans for the coming year and out years as well. We had finally reached a point in our personal and professional lives to "stop and smell the roses" as they say. Little did I know that in less than two weeks our lives would be drastically changed forever. So as Judi turns 51, we have a whole new life ahead of us with many new and unique experiences and challenges. I wonder what next year will bring?

Thanx again for the prayers and continued support.
Steve