January 2, 2006
Hi,
This is Sharon, Greg's mom, doing another guest report. It has been a busy day with a 7:00 a.m. leap out of bed. I know that may not be so early for some of you, but these days it's a very early start for us. Greg had an 8:00 a.m. appointment at the hospital and, considering that this was a holiday Monday, many things were pretty active there. The doctor was pleased that his stomach was healing up nicely, so that's a big relief. And it turns out that the swelling behind his right ear is actually just the fat taken from his stomach that was used to plug the holes in his crainium. Some of it has shifted a bit to make a lump, but it is nothing to be concerned about. We and his regular nurse were worried that it might be another hematoma like the one on his stomach. The fear was that it wouldn't be able to be drained without affecting the spinal-crainial fluid behind it.
From our perspective, the head scar has healed a lot and his stitches were removed last week; it doesn't look so angry and red as it did. In fact, after Greg had a hair cut today, his hair line matched more closely the portion that was shaved before the operation, so that altogether, the incision line doesn't appear to be quite so obvious as before the haircut. Of course, now he has to be careful not to get short hair bristles in his eye.
The other really noticeable difference that we see in Greg's face since we arrived last week is that his right eye appears to be more normal and symmetrical with his left eye, having lost some of its very "wide open and staring," (even glaring) appearance. In that respect, he has a more normal appearance when he is relaxed, so any fears he may have about his appearance should be allayed by that, or so we hope.
Between the hospital visit and a physio appointment we did a number of other appointments that involved a reasonable amount of walking. Here we noticed a continual and remarkable improvement in his gait.Those of you who know Greg probably also know that he has a particular style of walking -- or rather of *sauntering* along. It's not that he has returned to that characteristic style, yet no one could guess that three weeks ago he had such major surgery and just now, he has returned from a jaunt in the dark to a neighbour's place and managed quite well, though he tires easily. I mentioned Greg's ease of locomotion because of the contrast it presents with a friend who also had an acoustic neuroma some years ago. Even after three months this friend could no more than barely stagger along unaided. The difference between them in that respect is like night and day, and so Greg's ability to walk, manage stairs, bend and lean over seem all the more remarkable.
The physio appointment will continue to be a challenge for Greg as he comes to terms with the advice about creating more facial symmetry by damping down his animated side. When he demonstrated the technique for me the other day, talking by moving his jaw and his lips less, it did make a noticeable difference to his facial expression. It was definitely more even.Today he sat in a spinning physio chair that did leave him with a bit of vertigo by the time he returned to the car. But for all that, he seemed to regain himself before too long so he was noticeably tired by the time we finished shopping and drove home. It was a long day so he is entitled to his well-earned fatigue by the time he retired.
Kirstin enjoyed a few extra hours of sleep after we left this a.m. and woke up with renewed energy. It was clear. By the time we returned home, she had been busy puttering around the house, all day tidying, rearranging, putting up pictures, doing laundry, washing the tile floor --putting her own characteristic stamp on the house. The results were noticeable in many different areas. She even had time to talk to Pumpkin without any interruptions from the rest of us! We hope she won't pay for this round of activity tomorrow but as she recently said, some efforts are worth it. For even when they tire her out, she needs to do them for her own sense of well-being. We all hope that Kirstin's new meds will kick in sooner that the three to four weeks that has been suggested before a noticeable difference can be expected. Between Greg and Kirstin, fatigue is part of their normal routine now and how they deserve their hard earned rest!
Sharon Johnson
This is Sharon, Greg's mom, doing another guest report. It has been a busy day with a 7:00 a.m. leap out of bed. I know that may not be so early for some of you, but these days it's a very early start for us. Greg had an 8:00 a.m. appointment at the hospital and, considering that this was a holiday Monday, many things were pretty active there. The doctor was pleased that his stomach was healing up nicely, so that's a big relief. And it turns out that the swelling behind his right ear is actually just the fat taken from his stomach that was used to plug the holes in his crainium. Some of it has shifted a bit to make a lump, but it is nothing to be concerned about. We and his regular nurse were worried that it might be another hematoma like the one on his stomach. The fear was that it wouldn't be able to be drained without affecting the spinal-crainial fluid behind it.
From our perspective, the head scar has healed a lot and his stitches were removed last week; it doesn't look so angry and red as it did. In fact, after Greg had a hair cut today, his hair line matched more closely the portion that was shaved before the operation, so that altogether, the incision line doesn't appear to be quite so obvious as before the haircut. Of course, now he has to be careful not to get short hair bristles in his eye.
The other really noticeable difference that we see in Greg's face since we arrived last week is that his right eye appears to be more normal and symmetrical with his left eye, having lost some of its very "wide open and staring," (even glaring) appearance. In that respect, he has a more normal appearance when he is relaxed, so any fears he may have about his appearance should be allayed by that, or so we hope.
Between the hospital visit and a physio appointment we did a number of other appointments that involved a reasonable amount of walking. Here we noticed a continual and remarkable improvement in his gait.Those of you who know Greg probably also know that he has a particular style of walking -- or rather of *sauntering* along. It's not that he has returned to that characteristic style, yet no one could guess that three weeks ago he had such major surgery and just now, he has returned from a jaunt in the dark to a neighbour's place and managed quite well, though he tires easily. I mentioned Greg's ease of locomotion because of the contrast it presents with a friend who also had an acoustic neuroma some years ago. Even after three months this friend could no more than barely stagger along unaided. The difference between them in that respect is like night and day, and so Greg's ability to walk, manage stairs, bend and lean over seem all the more remarkable.
The physio appointment will continue to be a challenge for Greg as he comes to terms with the advice about creating more facial symmetry by damping down his animated side. When he demonstrated the technique for me the other day, talking by moving his jaw and his lips less, it did make a noticeable difference to his facial expression. It was definitely more even.Today he sat in a spinning physio chair that did leave him with a bit of vertigo by the time he returned to the car. But for all that, he seemed to regain himself before too long so he was noticeably tired by the time we finished shopping and drove home. It was a long day so he is entitled to his well-earned fatigue by the time he retired.
Kirstin enjoyed a few extra hours of sleep after we left this a.m. and woke up with renewed energy. It was clear. By the time we returned home, she had been busy puttering around the house, all day tidying, rearranging, putting up pictures, doing laundry, washing the tile floor --putting her own characteristic stamp on the house. The results were noticeable in many different areas. She even had time to talk to Pumpkin without any interruptions from the rest of us! We hope she won't pay for this round of activity tomorrow but as she recently said, some efforts are worth it. For even when they tire her out, she needs to do them for her own sense of well-being. We all hope that Kirstin's new meds will kick in sooner that the three to four weeks that has been suggested before a noticeable difference can be expected. Between Greg and Kirstin, fatigue is part of their normal routine now and how they deserve their hard earned rest!
Sharon Johnson
posted by Kirstin Jeffrey Johnson | 2:08 am
1 Comments:
Dear Sharon, Thanks so much for this mom's eye view. We are all relieved and grateful for each sign of progress and for the tenacity, courage, and grace with which G & K meet daily challenges that would flatten most folks.
Dear Greg and Kirstin, Who could have known, as you danced with such joyous abandon at your wedding a few years ago, what a heavy weight of "sickness and health" issues lay just around the corner? Yet we all knew, watching you together that day, that your love and your character as a couple was something very deep. You both married remarkable individuals! And together you offer us a brave and beautiful tutorial on living well. We love you. K & D and G & J
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