With Spring and Easter joy in the air, it seems an opportune time to update everyone on Donna's progress. Her previous updates of slow and steady progress continue. Our last month was highlighted by some breaks in the grind taking some time to visit Lafayette and Florida. These were both great to get Donna away from her hard work routine. The trip to Lafayette was too short so another in the not too distant future will be forth coming. It was great to see family in both of these locations and it provided a good opportunity for us to get an update on Donna's progress from people that have seen her a good bit but not for a little while. These are always the best source of info for us. The Florida trip involved a airplane flight and we had a chance to experiment with the wheelchair processes of flying and my ability to carry the belongings of two and still move Donna along. What we learned was that while a new experience for us, it was clearly not a new experience for TSA and the airlines. They had the process polished. Actually the Orlando airport, I have to say, was awesome in their accommodations for Donna. Donna didn't have to go through the metal detector so we'll have to wait a bit longer to know if her metal arm will set it off. The only negative that resulted from these trips was Donna's first fall. Not surprisingly it came on some outside concrete walking where her walker caught in a crack. Fortunately I was able to partially break her fall and she was no worse for the wear other than a skinned elbow. It did dramatically raise our awareness though to the idea that as she improves, complacency in protection can't be our approach as her growing confidence puts her in more and more potential risk situations. Donna's elbow has healed but caregiver readiness remains at high levels.
So here are Donna's update specifics:
Speech
The first 3 speech therapists Donna had since leaving hospital had told us that her speech is good enough and they seemed ready to cease therapy. We found this answer unacceptable as speech is so important to her and we felt sure more could be done. Therapist 4 agreed and realized Donna needed a voice specialist. Enter therapist 5 last week and wow, were we pleased. This woman really knew the issues, had experience working with patients of this type and was ready to dig in. Within 30 min Donna had progressed more than the last 3 months combined. Attending this therapy in the medical center adds additional wrinkles (and days) to Donna's therapy schedule but we are very optimistic about improvement. woo hoo
Use of Donna's Right Arm
This area just grows and grows. Habits are changing (slowly) back to being right handed and Donna's occupational therapist tells us she may need only pursue this therapy for about another month and then it will be time to take a break and just work on it, using the strategies they have taught her. This makes us happy and sad. Happy that it is great news but sad because Stacey, Donna's occupational therapist, is just awesome. It is not a coincidence that in her area Donna has come very far very fast. We are truly blessed to have Stacey as a therapist and will savor every day we still have. April will be a busy but great month in this area.
Eyesight
I haven't said much about this in a while but it has become apparent in the last month that Donna's double vision is a real barrier to her progress. Imagine seeing two of everything and then needing to balance, walk and grab things with coordination. Donna's doctors from the University of Houston Eye Institute are great and they regularly measure progress to verify natural healing or to establish a baseline for intervention. Natural progress has not really happened to this point. It still could in the next few months (they tell us) but if it does not, we will be looking at surgery this summer to fix the problem. Donna's actual vision is excellent. If she could just get rid of that 2nd Bob who follows her around all day, all would be well. We don't worry about this much because the solution to the problem is coming, one way or another, and we generally know the timetable for when it ends.
Walking and Balance
Such a big issue, our biggest desire for improvement and the area that demands our greatest patience. Donna's balance improvement continues but is slow. Her walking technique improves and we are working toward no use of her chair at home. We still have work to do but Donna can generally walk from breakfast to shower at night with her walker. As I indicated earlier, we need to hover like hawks because while her balance is better, usually once a day or so she will lose it and there is no telling when that will be. Over the next month we will be trying to work 1/day to none/day. She still uses a walker and gets some other assistance now and then. This is the real slow and steady area. When we leave the house we generally use her chair, so those who may see us out don't get to see much of her progress but it is happening slowly.
All these improvements happen in spurts. One of our doctors in the beginning told us it would be LONG and it would be two steps forward one step back. Some days it seems like nothing progresses and other days it just knock our socks off. Overall, I think his description of the journey to us was spot on. For all its bumps, we do appreciate being on this journey versus all we have passed and alternatives we have seen. I talk about our therapists now and then. Donna and I unfortunately have gotten to know the different between so-so, good and great therapists. Donna and I agree that right now all four of the therapists working with Donna, we would say are the finest we have seen anywhere. Physical (Joseph)l, Occupational (Stacey), Aquatic (Brittney) and Speech (Caitlind). We feel so blest to have them.
So we seek a normal life and it creeps in a little day by day. This month, with spring busting out in Houston, Donna and I have spent a fair bit of time in garden centers, with flowers and planting in our yard. She loves it so much and it is great to see her enjoy it even if her direct effort right now is limited. The other day normalcy struck me when Donna said she wanted to sit in bed and read in the evening before bed. I sat with her and read also. This is so us, and it felt so great. With normalcy comes the subject of work. It looms on the near horizon and we are blessed to have a good caregiver in Ms Ruby identified. Things will be transitionary for a while and we'll need to see how Donna progresses, we can't stand a let up in momentum.
Lastly, Donna has begun the process of reading this blog. She is in July 2012 and all she reads is news to her. Reviewing it again is painful and reminds me of the immense gratitude we have to so many who carried us on their shoulders and prayed their hearts out for Donna. Thank You so much
A couple photos. Donna on Easter and her pushing a cart full of weights with Joseph in therapy ( and i'm sure dreaming of bargain shopping)
Have a great month!
Bob
PS Donna has progressed from non-participant, to listener, to now editor of this blog. another sign of progress!
