A Tough Month

I can hardly believe that another month has passed us by.  I hope that everyone had a wonderful holiday season and had an opportunity to spend some quality time with friends and family.  The holidays continue to be difficult for us, but it was better than last year and I suspect that it will continue to get better each year.

The last month has been a difficult one for us.  Right after Christmas, Judi seemed to lose all of her energy almost over night.  She went from being "wide open," to barely being able to stay awake.  All she wanted to do was sleep.  She also started to bob her head up and down almost constantly while she was awake.  This was really a type of muscle tremor and she couldn't control it unless she focused directly on it.  This eliminated any hope of doing neurofeedback with her due to the impact that the head motion has on the signal transmitted to the computer.  She also started to rub her head constantly and started to run a low grade fever.  There are no words to describe the feeling I had in the pit of my stomach at this time.  These were exactly the same symptoms I saw when the infection surfaced in Judi's head the last time and it was almost exactly the same length of time since surgery (one day difference).  I won't go into all the details of what it took to finally get her CT scan done, but there were no indications of infection or other issues going on in her head.  I believe that was the first time I had relaxed since this started.  This obviously left us with the task of trying to figure out what was causing the problem.

I would have to write an epistle to describe the ordeal this last month has been navigating the medical and insurance systems.  We have ran numerous blood tests and although we have yet to find out what the issue is, we do know what it isn't.  There are no indications of thyroid, diabetes or vitamin deficiencies (all of these were high probabilities based on her symptoms).  My struggle now is where do we go from here.  It is so hard to get feedback from Judi to help figure out what is really going on and the Drs say they have checked everything that would cause her symptoms.  It is highly possible that it is a mental issue or just another one of those phases that she has to work through.  The impending move may be contributing to the issue, but I would not have expected it to happen in such a step fashion if this was the case.  I will most likely have them switch her back to the old medication to see if the new medication may actually be the issue.  We shall see.  She has been doing a bit better over the last week, but is still way off the norm.

We closed on the condo and it looks really great.  We have a few things left to get done on the punch list and then we will start the painful process of moving.  The long pole in the moving schedule now is getting caretaker coverage for Judi worked out.  Now that Jessica will no longer be there to cover for me until Judi's caretaker gets there in the morning, a significant change will need to take place. Judi seems to really like the condo and I am looking forward to getting her a fresh start as well.  Our new neighbors are extremely nice and have already offered to help in any way they can.  Once we get all moved in, we will have to do some type of get together so that everyone can see the new digs and have an opportunity to see Judi again.

The move will mark a huge turning point for our little family.  Jessica has essentially put her life on hold for the last three years to help her Mom and me through this ordeal.  It is time for her to get on with her own life and see what the world has to offer her.  She has had to mature way beyond her years and I can't begin to describe how proud I am of the woman she has become.  Although I don't write about it often (it is not my place), this has been extremely hard on Jessica.  I see the hurt in her eyes when she sees her Mom struggle and the longing to do the things that most Moms and daughters get to do.  I will continue to remind everyone not to take those things for granted, they are more special than you realize.  Thank you Jess for being who you are!!!!

Moving onward.  I did get in touch with the speech specialist that worked with Gabby Giffords.  She reviewed Judi's case and unfortunately Judi's type of injury is not really her specialty area.  She specializes in left lobe injuries.  She did provide me some names of people that she felt could help Judi if anyone could and allowed me to use her name to get through all the traditional impediments that slow down contact.  Unfortunately, they are all left of the Mississippi.  The top recommendation is at the Mayo Clinic, so Judi and I will be heading that way once we get the move done and our lives slow a bit.

Pool therapy continues to go well and Judi really looks forward to that time.  I believe the social interaction is as beneficial as the physical results.  I am looking hard at whether to continue the neurofeedback (NF) training.  We have not trained in the last month due to the issues I described above and there have been no negative issues.  In reality, I think she has been doing better without it.  That is not because the NF is causing a problem, it is because I am able to do other things with her during the time that would typically be consumed by NF.  I think it made a huge difference early on, but it seems to have reached a plateau.  This is obviously a difficult decision because I want to give her every opportunity to recover.  If I could find someone that is reasonably computer savvy to do it during the day, that would be a win-win.

I guess that hits the big stuff.  I will be asking for help to move when that time comes.  Many of you have volunteered and I am very grateful.  I also need to thank Angela Macintosh for staying with Judi while I worked through all the condo closing issues.  A huge thank you also goes out to Ginger Dickert for keeping my refrigerator full of awesome vittles.  I am truly humbled by the continued support from so many.  Please keep us in your prayers as we start yet another phase of our lives.  As I am sure you have figured out, I have decided to keep using the blog until we get moved to the condo and then look at the switch to facebook.

Steve