Friday, January 21, 2011

Happy New Year

I can hardly believe that 2011 is already here and that I still have no clear understanding of where this journey will take us. I have been asked a lot of questions lately that make me think it is time to do a review of Judi's overall condition.

Judi is still confined to a wheel chair and is unable to move her left arm or leg on command. They do respond to stimulus and reflex which indicates the lack of movement is associated with the brain injury. She is not able to move/control the wheelchair at this time.

She is still unable to talk, but does make many sounds and has a heart warming laugh. The inability to talk is fairly common with brain injuries due to the multiple areas of the brain that come into play to perform this task. She still has significant difficulty swallowing. The issues here are similar to those that impact talking. Judi also had significant damage to the temporalis muscle on the right side as a result of the craniotomy that was performed right after her injury. This is the muscle you feel when you rub your temple and functions to close your mouth to provide strength for chewing. This results in an imbalance on her jaw especially when chewing. She is able to eat foods that I grind up almost to a puree and drink liquids that are thickened to a "nectar" consistency. The food/liquid has to be thick enough that she is able to swallow fast enough to prevent them from going down her windpipe. To give you an idea of the work involved for her to eat, it takes about an hour and a half for Judi to eat a meal. This consumes a lot of our "alert time," but the only way she gets better at it is to continue doing it.

She is able to answer "yes" or "no" to questions using hand signals when she is really tuned in. There is a significant delay between question and response as her brain processes everything. This is commonly referred to as "slowing." We really lost a lot of ground here following the removal of her bone flap this summer due to the infection. She was signing approximately 28 signs prior to the surgery with very little slowing and now struggles with 3 or 4 signs. This is getting better. Judi has shown a fairly significant improvement in this area over the last couple of weeks. Judi's awareness and understanding of what is going on around her remains at a high level and she is ALWAYS listening. She enjoys watching all of her favorite TV shows and movies. It is obvious that she comprehends what is going on by the way she responds to even subtle humor and comments. Her biggest issue is input/output functions of her brain. I can tell she is trying hard to get her body to respond to what her brain is telling it to do, but it is just not cooperating (YET!). When you put all this together, Judi still requires someone to be with her 24 hrs a day and depends on them for all of her needs.

So what's on the horizon?
Recovery of her left side movement is still possible. We continue to keep up her therapy at home that maintains the strength in these muscles and provides the nerve stimulation that tries to activate the brain's control again. Time/practice is the main strategy for talking and swallowing improvement. We are also performing the exercises and therapy to continue improvement in this area as well. I am researching the possibility of reconstructive surgery to restore function to the temporalis muscle. My hope is that after we get the prosthesis installed this year, Judi will quickly recover to the level she was at prior to the infection this summer and continue recovering at an accelerated rate. We continue to perform neurofeedback (NF) at home as well as routine trips to NC to improve brain function. Just for general information, the Army has also started using NF for the troops that are returning home with brain injuries. I am praying hard that there will be a medical break through in the treatment of this type of brain injury due to the large number of troops returning home that are impacted by the same type of injury that Judi has.

I continue to be very optimistic regarding Judi's potential for recovery. I have been able to have some fairly good conversations with her when she was alert by asking her a series of questions that she can answer yes or no. I try to ask different questions from multiple angles to ensure that answers are consistent and she is not just guessing. Here are a few items that are probably of interest:
1) She remembers most of the events leading up to the accident and tells me she remembers the accident itself. I believe that her memory is starting to come back to her (slowly, but surely) because when we did a similar exercise in the fall her memory seemed to stop about three months before the accident.
2) She promised me that she will not give up trying to find a way back. I promised her that I wouldn't give up either.
3) She is also very scared. I asked her this question point blank and it was one of the fastest "yes responses" I have ever received from her. I have indicated that she showed a lot of fear during the last hospital stay and after the last seizure she was also frightened. I have reassured her that it is normal to be scared and that I would be with her through it all. She always gives me a big smile then. I suspect she is also concerned about what this is doing to Jess and me so I continue to talk to her about things we are going to do in the future. Judi has been around folks in her condition for many years, so I try to be straight up with her. She always responds well when I tell her "I don't hear no fat lady singing!"

I have also been asked a lot of questions about how Jess and I are doing. I won't speak for Jess, but would say she is coping in her own way and continues to be a great help to me and her Mom. As for me, I'll admit straight up that I am tired physically, mentally and emotionally. I know that I cannot keep up this pace indefinitely, but I will not give up on her. I had hoped I could slow down a bit last fall, but the summer surgery put the kabosh on that plan. Hopefully I can slow down a bit after the prosthesis surgery. I feel like I have the reserves to continue on. It is a source of energy to me when I see her improving. I DO appreciate the concern that many of you have expressed and I am truly humbled by the support from so many. I continue to lean heavily on the belief that God would not put a larger burden on me than I can handle.

Hopefully this brings everyone up to speed on where we are today. Please keep us in your prayers. I am convinced that the power of those prayers is what is fueling all three of us. Thanx again for all your support.

Steve