Judi is getting a little better in some areas and losing a little ground in others. I am firmly convinced she is desperately trying to tell me something. She is working so hard to get the words to come out and she is very close. Her awareness level continues to be very high, but she continues to struggle with the input/output aspect. I suspect it is driving her crazy inside that her body is not doing what she is working so hard to tell it to do.
Her memory of past events is clearly getting better. I gauge this by asking her questions when she is "tuned in." She is excited about hockey coming back to Augusta and wants to go to a game soon. I am also trying to get tickets for the Manheim Steamroller concert next month (she loved their Christmas tunes).
Judi's energy level has definitely decreased and her attention span has shortened significantly as well. I suspect that the missing bone flap combined with the long term antibiotic use are the key culprits here. We have another month of antibiotics to go and they won't consider the prosthetic surgery for at least six months after the antibiotics are finished. The weather (barometric pressure) really gives her head a fit as well.
Judi has essentially shut down when it comes to therapy. Again, I think the bone flap is a primary contributor here. That combined with the fact she has to wear the helmet while she is there has made that a negative experience for her. As I had feared, they are going to discharge her from therapy the middle of next month due to a lack of progress/participation. I am told that some people do better after a break from rehab and that perhaps after the prosthesis surgery is done she could benefit from further therapy. They also tactfully told me that people in her age group typically have recovered the majority of what they will recover by this time. I don't want anyone to take away from this that I am accepting this. Those of you that know me also know that I will NEVER give up as long as the good Lord gives me the tools to keep going. We'll pick up the therapy slack at home to the best of our ability and keep her strong in preparation for the next surgery.
Swallowing continues to get better and she is eating well. She still won't feed herself, but we'll keep nudging her along here. She has difficulty "initiating" most actions since the surgery. If you ask her a question, most of the time you have to lift her arm before she will respond with signs. This one has been extremely difficult for me to take because she was doing so well before the surgery. Since there were no issues in the surgery, I am expecting all of this to return once we have the prosthesis back in place.
The head continues to be my nemesis. Some days she will hold it up pretty well and others, she'll keep it down most of the day. This makes it very difficult to work with her on most activities (writing, item identification, etc.). As I said before, I can't restrain her head like I did before to help train her neck muscles due to the shape of the remaining bone in her head. I'll keep working hard here because the benefits are so great. If anyone has any ideas or experience here, I would appreciate the input.
We are continuing neuro feedback (NF) hot and heavy. She seems to respond well here and perhaps that will be the difference in success and failure in the long term. We continue to make our trips to NC at a reduced frequency due to the fact we are focusing on the stabilizing sites only. Once we start changing them, we'll increase the frequency of the trips.
I think that pretty well covers where we are today. Many of you know that I love music of all types and listen every time I get a chance. Judi used to get a kick out of the range of music I listened to. It is not uncommon for me to listen to Pink Floyd and Garth Brooks in the same sitting. I have become a huge fan of the Zac Brown band of late and often think his tunes are telling my life story. One of his recent tunes "Let It Go" hits very close to home these days. If you haven't heard it, give it a listen.
One portion of the refrain runs like this:
Save your strength for the things you can change.
Forget the ones you can't.
You gotta let 'em go.
I'll leave it up to you to apply those words to your own lives and would tell you that it is very good advice. I'll also admit that it is easier to say than to put in practice. I know that things happen for a reason and I learned long ago that I am not in control of where this journey will ultimately end. I also know that I made a vow 30 years ago to Judi and God that I would "love, honor, protect, cherish her in sickness and in health until death do us part." I mention it here because I still need your help and prayers to make it through this challenge. Judi loves to see old friends so don't hesitate to stop by if you have a chance even if it is only for a few minutes. I know in my heart that Judi is going to make a significant recovery beyond where she is today, but she won't be able to do it without our help.
Steve
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