Merry Christmas

WOW, Christmas Eve is here already! A lot has happened over the last few weeks, so I'll do a quick update for now and provide more detail after the first of the year.

Judi continues to try very hard to talk. It is tough to watch her struggle with this because I know it must be driving her crazy not to be able to do one of her favorite things! We did get the swallow study done that utilizes a camera and all went well there. It did let us see her vocal cords and their response and there were no abnormalities identified. We'll just keep working with her coordination of all the activities necessary to make words and wait for her to figure it out. We did identify as well that her current liquid/food consistency is correct for her current condition until she gets better control of her swallow/tongue. I mention the talking and eating together since I believe the issues overlap here.

I am working hard to keep a balanced rehab program for her at home. She still gets tired easily and many of the activities need to catch her when she is the most alert. I have developed a schedule (that shouldn't surprise those of you that know me) that tries to integrate all the Judi activities and fun time as well. As expected there isn't enough time to do everything I would like to do, so we do the best we can while protecting the "us" time which seems to help both of us.

We did get the botox treatments done and they seemed to have helped a great deal. We will have to keep working with the arm and see how much extension she retains. I am also doing a fair amount of e-stim on her arm as well. I keep looking for some sign of restored control, but so far there has been no change.

We did have a setback that I am still worried about. Judi had a seizure about two weeks ago right out of the blue. Prior to this, I have always been able to link her seizure activity to some medical condition or stimulation to her mental state. As far as I can tell, none of these were significant contributors this time. She only had one seizure which was also different from her previous pattern. I was at work but was able to talk her through it over the phone with her caretaker's help. She was very frightened this time after it was all over which is just another indicator that her awareness level remains high. We obviously did not change her seizure medication dose at her neurologist appointment. We did a full range of tests to ensure she did not have any infections that may have lowered her seizure sensitivity level. Everything came back negative. She is periodically spiking a low grade fever which is what worries me since there is no infection driving it. My suspicion is she may have had a bit of a cold/bug that may have caused the temperature spikes. Not sure, but they are over now.

Her neurosurgeon had to cancel her appointment next week so I am not sure when that will be rescheduled. That will also reschedule the CT scan so I'll have to wait a little longer to begin working the prosthesis issue.

As I sit here watching Judi sleep, the reality of how much our world has changed came crashing down on me. I am not sure where God will take us this year, but I have never been as emotionally torn as I am today. Knowing that there is at least one major surgery facing us this year already has me on edge. There is no such thing as "minor" brain surgery! It was exactly this type of "routine" surgery where Judi lost her best friend a couple of years ago when all indications were that she would make a full recovery. On the flip side, the surgery should be the last and put Judi in a position to begin her recovery along the track she was going before the surgery this year. I have always tried to focus on the future and learn from the past. I just can't seem to get the two reconciled quite yet. So if you see me walking around in a fog, don't hesitate to jerk me back to reality.

Here's what I do know. I am blessed in more ways than I could ever describe here. Judi is better this year than last and I have faith that trend will continue. Jessica continues to be the most amazing young woman I have ever known and the impact she is having on young lives as a school teacher will probably never be known. I do know it will be huge. I have been able to spend time with my brother and his wife and they have become an integral part of helping Judi (and me) get better. I have been blessed and truly humbled by all of your thoughts and prayers. I have found support and hearts of gold in some surprising places along the way. Thank you so much for everything.

Merry Christmas to all of you and I pray that you have an opportunity to spend time with those you love and/or hold special.

Steve