Donna has had a few good days barring a bit of a night medicine issue that knocked her out for part of today. The right arm continues to improve slowly. It is nice to see it improve a little every day though.
I'm trying to recover on rest so will forego much of a message here.
Bob
Friday, August 31, 2012
Wednesday, August 29, 2012
Wednesday, August 29th from Sarah
Since my last visit, my mom has become far more mobile and aware. I was there the day we moved her to TIRR, and the nurses were talking about how she wouldn't be in her bed much. I remember thinking, "Then where is she going to be?? She can't DO anything but lay down." But as soon as I arrived yesterday, I started being taught how to move my mom all over the place. My dad stated that he would teach me how to transfer my mom in and out of her chair, and before I even knew what was happening, she was reaching up, grabbing me around my neck, and pulling herself up...which pulled me right over. She blindsided me with her strength and ability!
Today, my dad had to take care of a few things, so he was gone for a big chunk of the day and my mom was in my hands. She thanked me multiple times for spending the day with her, so I guess I caught on to things well enough. My mom has a very busy schedule at TIRR during the week, and it definitely wore me out! Although we've been told that my mom has advanced out of her current memory class, she was still in the lower level class for today. Apparently my mom has never made it through the full hour, and she usually gets so bored that they end up taking her back to her room in the middle of the session. When my dad dropped my mom off to class today, he said, "Now Donna - What are we going to try to have today?" "Patience" she replied. Well...when I arrived at the end of the hour to pick her up, I could hear the group therapist applauding her for lasting the entire class period. I echoed the praise as I rolled my mom out of the room. Not 2 steps down the hall, however, she started saying VERY LOUDLY how BORING that class is. Attempts to quiet her until we got to the elevator were hardly successful :-)
After memory class, we decided to sit outside together for a little while. We talked for a bit about how slow she feels her progress is, but how much her therapists are helping her to regain her skills. There was a man walking near us with a walker and with a therapist helping him. I pointed and said to my mom "you see that man? That's going to be you soon - starting to walk with a walker." Three hours later, in physical therapy, I was sitting there watching her therapist stretch her right arm. This is very important, yes, but I was starting to feel like my mom was getting off a little easy today. Towards the end of the session, Laura, her therapist, pulled out a walker and told my mom it was time to stand up! I was so excited and started snapping pictures for my dad. When we told him later about her walking, my mom said, "It wasn't pretty, but I did it." I can agree with that. It took a lot of help, but she walked a very impressive distance for her first time, and that day of independent walking is within sight.
My dad, my brother and I were all hanging out with my mom tonight, and she was just visiting with us, showing us more and more of her personality. She makes jokes and facial expressions that just make us smile hugely, because it's my mom in every way. It can be hard to see my mom's deficits and to watch her get frustrated with them. She made it very clear today that, not very long ago, she was able to do all of the things that she is working so hard to do again now, and she wishes this was a nightmare. I think we can all understand that feeling very much. These comments from her are another example of her increasing awareness about what's happened. Tonight we learned a lot of horrific details about another patient's situation and the struggles that their family is coping with. It literally brought me to tears when I heard about their situation, and it sheds a whole new light on what our family is going through. Seeing the pain of others makes our pain so much more bearable.
Today, my dad had to take care of a few things, so he was gone for a big chunk of the day and my mom was in my hands. She thanked me multiple times for spending the day with her, so I guess I caught on to things well enough. My mom has a very busy schedule at TIRR during the week, and it definitely wore me out! Although we've been told that my mom has advanced out of her current memory class, she was still in the lower level class for today. Apparently my mom has never made it through the full hour, and she usually gets so bored that they end up taking her back to her room in the middle of the session. When my dad dropped my mom off to class today, he said, "Now Donna - What are we going to try to have today?" "Patience" she replied. Well...when I arrived at the end of the hour to pick her up, I could hear the group therapist applauding her for lasting the entire class period. I echoed the praise as I rolled my mom out of the room. Not 2 steps down the hall, however, she started saying VERY LOUDLY how BORING that class is. Attempts to quiet her until we got to the elevator were hardly successful :-)
After memory class, we decided to sit outside together for a little while. We talked for a bit about how slow she feels her progress is, but how much her therapists are helping her to regain her skills. There was a man walking near us with a walker and with a therapist helping him. I pointed and said to my mom "you see that man? That's going to be you soon - starting to walk with a walker." Three hours later, in physical therapy, I was sitting there watching her therapist stretch her right arm. This is very important, yes, but I was starting to feel like my mom was getting off a little easy today. Towards the end of the session, Laura, her therapist, pulled out a walker and told my mom it was time to stand up! I was so excited and started snapping pictures for my dad. When we told him later about her walking, my mom said, "It wasn't pretty, but I did it." I can agree with that. It took a lot of help, but she walked a very impressive distance for her first time, and that day of independent walking is within sight.
My dad, my brother and I were all hanging out with my mom tonight, and she was just visiting with us, showing us more and more of her personality. She makes jokes and facial expressions that just make us smile hugely, because it's my mom in every way. It can be hard to see my mom's deficits and to watch her get frustrated with them. She made it very clear today that, not very long ago, she was able to do all of the things that she is working so hard to do again now, and she wishes this was a nightmare. I think we can all understand that feeling very much. These comments from her are another example of her increasing awareness about what's happened. Tonight we learned a lot of horrific details about another patient's situation and the struggles that their family is coping with. It literally brought me to tears when I heard about their situation, and it sheds a whole new light on what our family is going through. Seeing the pain of others makes our pain so much more bearable.
Tuesday, August 28, 2012
Tuesday August 28
Donna slowly gets better and the therapy here is excellent and often varied. We found out today that Donna has been promoted to the next memory class. This was after she told us that the people in her memory class were "losers" and she knew way more than them. Sounds like our girl....
The really interesting therapy today was music therapy. I thought it would be a class but when we got there it was just Donna and two excellent therapists/musicians. They took Donna through a fun/educational game that at various stages required her to name a song from her memory that connected the theme. Then they proceeded to play and sing the song (including Donna). It sure seemed special to have this all to ourselves. Donna was into it even though she poo pooed the concept prior to going.
In her speech therapy today she aced a bunch of really hard questions that had Sarah and I amazed. One she challenged the therapist on the answer and we had to agree after hearing her answer that she was right. Later in the session she was working on vowels sounds in soft tones and I found it to be the perfect sound to fall asleep to (so I did) then suddenly she called my name and I abruptly woke and gave them all a chuckle. A bit embarrassing but I get winks where I can.
Based on her progress, all of her therapists told us today that they signed her up for a bunch of new things. They informed us her schedule was about to be even busier. It really is a joy to have everyone telling us constantly about her noticeable improvement. The only person who is not buying it is Donna. She tells us she is going downhill. I think it is a function of her rapidly growing awareness and little understanding of what her condition was only a week ago. That awareness brings lofty expectations and the awareness is growing even faster than the good progress. Fortunately she translates this into determination. It will be her assurance of success.
Tired tonight so enough for now. Great having Sarah here but sleep wins the day.
Good Night
Bob
Monday, August 27, 2012
Monday August 27
Today was a great day of progress and insight.
Donna started a new memory related group session that she will go to
every day. One of the impacts of a traumatic brain injury (TBI) is that
after coma the patient goes through a period called Post Trauma Amnesia (PTA).
During this period, the injured may remember everything from their life
pre-injury but has great difficulty remembering the short term issues since and
has difficulty placing themselves in space and time. This is because
during this phase the brain is still healing but confused and not able to
process the new information.
Donna has seen these PTA impacts but her neuropsychologist this
morning indicated that she is close to exiting this phase. This is great
news for several reasons. First, she is improving at a quick pace,
second, it means that her brain is getting its act together, third, we're told
that the 3 months after exiting PTA are the most rapid months of recovery.
Well this was just music to my ears because Donna is improving quickly
now and the thought of a more rapid 3 month recovery period sounds like heaven.
He also said that while the post-PTA 3 months are the most rapid, the
post-PTA 12 months will continue to be significant for improvement. He also indicated that Donna’s progress is
great and she is well on track.
I've been asked to clarify just what is Donna's condition.
Physically Donna still has a few limitations. The physical limits
are mostly muscular or neurological and many involve her right side. It
has just been the slower side to wake up due to the brain trauma. The
slow wake up impacts muscular strength due to limited activity. She has a
few muscles that are too tight, but she'll get some injections within the next
day or so that should rectify them. From a motor controls perspective,
her brain is sending more signals to the right side every day. This
excites us all, and has the therapists strengthening the muscles to keep up and
accelerate it. Currently these right
side issues set the pace of her physical development.
Regarding speech and cognitive functions, Donna is able to speak and
express herself well. The slower right side has her still slurring a bit
but it is improving continuously. Her mind is all there; it is clear from
the things she says. She does still have trouble remembering short-term things
and making certain types of connections but, as I mentioned earlier, this is
normal and expected to improve materially.
What is amazing is that she improves everyday and having gotten more
of her medications removed, she is Donna in smile, word and action. She wants it all and wants it now. That determination will get us there.
One of the other recovery issues is Donna’s swallow. I have talked
about this in the past. Swallowing is a
complicated process that gets out of synch after a coma. It is expected to come back fine (and Donna’s
is coming back steadily) but we need to be patient Ugh….. As we wait she needs to stay away from thin
liquids (like water) but it doesn’t keep her from eating real food. This swallow issue is a prerequisite for
taking medications by mouth and therefore a limit on removing her peg line to
her stomach. She is motivated and is
eating and practicing that swallow hard.
I expect it wont take long to line out this issue (crossed fingers).
Well there is your latest Donna run down. Hopefully that explains where she is but she
is changing daily and in a positive direction.
On a much lighter note, to get Donna’s right Achilles fully
stretched, Laura, Donna’s physical therapist asked me today if 5 times a day I
could stand with her and shift her weight between her feet. She asked me this
because I have become a pretty accomplished person transferor in many methods. In response I told Laura, “let me get this
straight, my homework is to stand with my arms around my wife shifting weight in
a way that looks a lot like slow dancing and I need to do this 5 times a day
for 10 minutes each?” You should see
Donna beam when we stand with our arms around each other swaying side to side. We had to demonstrate for a lot of the TIRR
staff today. Best homework I have ever
done. I have to believe if 5 times is
good, 10 have to be much better.
Thank you for all the support.
2.5 months is a long time to keep the support going but we feel it and
thank you all.
Sarah is arriving tomorrow and Donna and I are very glad to see her.
Thanks to all
Bob
Sunday, August 26, 2012
Sunday August 26
The day started a little bumpy but turned into a gem. Occasionally Donna has a very unsettled feeling that comes over her and it drives her a bit crazy. These feelings kind of peaked on Thursday and hence why we dropped the neurostimulants. Donna has felt great since but had a few of those feelings early today. We'll be revisiting medicine issue with the doctor in the morning. Fortunately all of these feelings subsided early and she had a great day.
Donna got added to cooking group today and she had a good time. They made Banana muffins and it was good to see Donna engaged in the cooking process. It was also nice that they delivered the hot cooked muffins to Donna's room for hr to eat. They have some nice programs on the weekend here that force manual dexterity.
So on to the really fun things. On a trip down the street into a really open area, John proved that Donna's new chair facilitated easy spins like you would do when dancing. Next thing you know he and Donna's were spinning away in an empty food court. She and I duplicated the experience later when we went to the hospital cafeteria. Just goes to show you can make your own fun.
Tonight Donna and I started going through some letters and cards from well wishers. Her awareness has reached the point that she very much appreciates all of the sweet and loving messages. It was fun taking our time and going through just a few. Between the letters and us beginning to read this blog, she is starting to digest the enormity of it all. Regarding the blog, we are back in the first week so we have a long way to go. I so enjoy sitting with her and just talking.
One of my highlights today was seeing the continued increased movement with Donna's right arm. I see small improvements everyday. This evening we started our own exercise/dexterity regime and it took less then 30 min for us to start to see progress. I'll report more as we progress but Donna and I were very motivated and it seemed to be real progress. We need to get that arm back in shape and I was very encouraged about what we can accomplish.
I slowly feel myself getting my girl back. Its slow but optimism is high and her progress is steady. We both look so forward to the therapy rigors that start tomorrow again. Progress is happening.
Thanks
Bob
Donna got added to cooking group today and she had a good time. They made Banana muffins and it was good to see Donna engaged in the cooking process. It was also nice that they delivered the hot cooked muffins to Donna's room for hr to eat. They have some nice programs on the weekend here that force manual dexterity.
So on to the really fun things. On a trip down the street into a really open area, John proved that Donna's new chair facilitated easy spins like you would do when dancing. Next thing you know he and Donna's were spinning away in an empty food court. She and I duplicated the experience later when we went to the hospital cafeteria. Just goes to show you can make your own fun.
Tonight Donna and I started going through some letters and cards from well wishers. Her awareness has reached the point that she very much appreciates all of the sweet and loving messages. It was fun taking our time and going through just a few. Between the letters and us beginning to read this blog, she is starting to digest the enormity of it all. Regarding the blog, we are back in the first week so we have a long way to go. I so enjoy sitting with her and just talking.
One of my highlights today was seeing the continued increased movement with Donna's right arm. I see small improvements everyday. This evening we started our own exercise/dexterity regime and it took less then 30 min for us to start to see progress. I'll report more as we progress but Donna and I were very motivated and it seemed to be real progress. We need to get that arm back in shape and I was very encouraged about what we can accomplish.
I slowly feel myself getting my girl back. Its slow but optimism is high and her progress is steady. We both look so forward to the therapy rigors that start tomorrow again. Progress is happening.
Thanks
Bob
Saturday, August 25, 2012
Saturday August 25
Donna had a great day. The reduction in sleep medication had her get up early and she was very much herself visiting and chatting. She threatened fatigue a few times but like the girl we know and love, she was too afraid to miss something fun to actually sleep. It was great to see. Many of her ailments are subsiding (sore throat, upset stomach) so we are taking advantage to get her to eat more. Its slow but she is trying.
Well it has been 10 weeks today since the accident. 70 days. In case you are wondering if we are worn out, the answer is no. We are steady as she goes and see enough improvement in Donna daily to feel rejuvenated. Don't misunderstand me, Donna still has a way to go but it is exciting to watch.
It was awesome today to have no excitement and therefore really nothing to write about. Alleluia.
Donna and I started the day with several goals for the day. She did great on all and it really helped focus effort. I think we will do this more. We're expecting another quiet day tomorrow as we work back toward the work week.
Donna is scheduled for a treatment Monday that will relax her right leg muscles. Many positives but the downside is that it may reveal the leg isn't as strong as we think. Thats a good thing because we know how to fix that. We'll see how that goes.
I can start to envision that glorious day when Donna gets to come home. We're not close yet but I can smell it.
Thanks for all the prayers and support.
Bob
Well it has been 10 weeks today since the accident. 70 days. In case you are wondering if we are worn out, the answer is no. We are steady as she goes and see enough improvement in Donna daily to feel rejuvenated. Don't misunderstand me, Donna still has a way to go but it is exciting to watch.
It was awesome today to have no excitement and therefore really nothing to write about. Alleluia.
Donna and I started the day with several goals for the day. She did great on all and it really helped focus effort. I think we will do this more. We're expecting another quiet day tomorrow as we work back toward the work week.
Donna is scheduled for a treatment Monday that will relax her right leg muscles. Many positives but the downside is that it may reveal the leg isn't as strong as we think. Thats a good thing because we know how to fix that. We'll see how that goes.
I can start to envision that glorious day when Donna gets to come home. We're not close yet but I can smell it.
Thanks for all the prayers and support.
Bob
Friday, August 24, 2012
Friday August 24
Whew... Better than yesterday. The doctor cut out all Donna's neurostimulants (she was getting 3) and she was much calmer, clearer but pretty sleepy. The doctor considered that a success so we will continue on this way for several days. Sleepy is fine for the weekend. The feeling is she may catch her wind on this method and be so much better without the medicine. I am always in favor of the less medicine scenario. With all that medicine Donna was doing some things in frustration that were out of character for her. Great to see our tired, true girl.
Despite the fatigue, armed with her new lightweight chair, Laura her physical therapist challenged Donna to walk in her chair moving her feet from the front lobby of TIRR to the patient elevators. Now for those who have never been here, that is about 100 yards. Donna with just a little practice yesterday and a right foot that often acts more like a brake than an accelerator, painfully made it. I probably had the bigger learning here which is that the time has come for me to be silent and out of sight during these sessions. The therapist can challenge and be tough. Donna was proud and we were quick to tell her that this was only a start. Much discussion today about some efforts we will take next week to relax some of her stiff leg muscles. It may make things harder in the short term but should pave the way to real normal walking over time. It is so fun to see people who haven't seen her in at least a week. They help us recognize the progress.
Well one of the life lessons I mentioned a few days ago was reaffirmed today. I ran into a young lady here about Sarah's age and she is here with her brother. She and her father have been staying with her brother around the clock due to some respiratory concerns that could occur during the night and they want the insurance. Her brother was in an accident 8 months ago. Her mother was killed in the accident. In the now nearly 4 weeks Donna has been awake, she exceeds his ability by many times. It reminded me how small our challenges can be perceived and it showed me what people of great faith and commitment really look like. Their concern was that they were moving to a facility that may not allow them to stay 24/7. That is commitment. I was in awe. It was not lost on me that instead of this young man and his mother, it could very well have been Donna and I.
On a funny note, Donna's frustrated behavior didn't rattle the roommate (amazingly) but did rattle the staff enough. As of last night we are in a private room. I'm not sure if this wasn't all part of a Donna master plan.
Good Night
Bob
Despite the fatigue, armed with her new lightweight chair, Laura her physical therapist challenged Donna to walk in her chair moving her feet from the front lobby of TIRR to the patient elevators. Now for those who have never been here, that is about 100 yards. Donna with just a little practice yesterday and a right foot that often acts more like a brake than an accelerator, painfully made it. I probably had the bigger learning here which is that the time has come for me to be silent and out of sight during these sessions. The therapist can challenge and be tough. Donna was proud and we were quick to tell her that this was only a start. Much discussion today about some efforts we will take next week to relax some of her stiff leg muscles. It may make things harder in the short term but should pave the way to real normal walking over time. It is so fun to see people who haven't seen her in at least a week. They help us recognize the progress.
Well one of the life lessons I mentioned a few days ago was reaffirmed today. I ran into a young lady here about Sarah's age and she is here with her brother. She and her father have been staying with her brother around the clock due to some respiratory concerns that could occur during the night and they want the insurance. Her brother was in an accident 8 months ago. Her mother was killed in the accident. In the now nearly 4 weeks Donna has been awake, she exceeds his ability by many times. It reminded me how small our challenges can be perceived and it showed me what people of great faith and commitment really look like. Their concern was that they were moving to a facility that may not allow them to stay 24/7. That is commitment. I was in awe. It was not lost on me that instead of this young man and his mother, it could very well have been Donna and I.
The life lesson it reaffirmed for me was:
40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back..
On a funny note, Donna's frustrated behavior didn't rattle the roommate (amazingly) but did rattle the staff enough. As of last night we are in a private room. I'm not sure if this wasn't all part of a Donna master plan.
Good Night
Bob
Thursday, August 23, 2012
Thursday August 23
The most difficult day to date. Today Donna's frustration boiled over and sustained itself for the day. It was partially fatigue, a late night activity kept her up, but mostly it was her frustration with a desire to be better. Her doctor described it as a normal step and that it is not surprising to see great frustration at this stage. I don't think TIRR fully understood the the wrath of a an unhappy cajun woman. For me it was a full day of minute by minute patience and every day to this point was only preparation to perform today.
After discussion with her doctor we will be making some medication changes tomorrow, for the most part taking several away. The outcome is uncertain but by this time tomorrow we will know the answer. I'll just say what I have all along, I'll bet on Donna's brain over any medication anytime.
Amongst it all Donna's swallow test didn't perform to our desires. Her muscles are still not ready for the thin liquids but her therapist is going to upgrade her to better solid foods. We know what to practice and we are getting on with it. The test itself was amazing including a camera in which we could see her swallow from the inside. pretty cool.
As I was up with her last night, I'm off to sleep. Lets hope for a better day tomorrow. I need it.
Bob
After discussion with her doctor we will be making some medication changes tomorrow, for the most part taking several away. The outcome is uncertain but by this time tomorrow we will know the answer. I'll just say what I have all along, I'll bet on Donna's brain over any medication anytime.
Amongst it all Donna's swallow test didn't perform to our desires. Her muscles are still not ready for the thin liquids but her therapist is going to upgrade her to better solid foods. We know what to practice and we are getting on with it. The test itself was amazing including a camera in which we could see her swallow from the inside. pretty cool.
As I was up with her last night, I'm off to sleep. Lets hope for a better day tomorrow. I need it.
Bob
Wednesday, August 22, 2012
Wednesday August 22
Donna's fine but she gave us a bit of a scare this am. The girl who a few days ago didn't want to sleep didn't want to wake up this am. What little body language she gave us made it sound like her head was hurting. We weren't too concerned at 8, a little concerned at 9, by 10 when she wasn't awake her Doctor sent her off for a CT scan. As I found out later one of the bad concerns for a traumatic brain injury is a disease that had the symptoms she was showing. By 11:30 when we were on our way back from the scan, she suddenly woke up and was as happy as could be. Ironically we ran into her doctor as he was looking at the preliminary results, a wide awake Donna strolled by, smiled and wished him good morning. The doctor gave us the all clear and we came to believe after more discussion that her nurse gave Donna some of her sleep medicine late. Her being the light weight she is, it had that extended sleepy effect. We were all happy. I really wasn't worried till they all seemed worried. Needless to say there are now standing orders for her to get that medicine pretty early.
The good attitude extended through the day with good sessions. Emily, Donna's Speech therapist is doing another swallow test tomorrow am and if well Donna's food options will be expanded. Alleluia as she doesn't like many of the options now. Lets hope she passes.
The highlight of my day was this evening when Donna had eaten all she wanted and since I hadn't had lunch or dinner I asked her if she wanted to go to the cafeteria. In the evening it is empty. I got some food and she and I sat at a table and had the closest thing to a meal together we've had in 2.5 months. It was awesome. We talked and I ate. The best part was at the end when I told her I had enough and she said she wanted to be sure I had enough, and encouraged me to bring it with me. I passed but it was not lost on me that for the first time in a long time, she was trying to take care of me. I loved it and we will have that date again. you can bet on it.
As I have said many times, sorry for the poor response to so many of you. My days run 7 am to 9:30 pm at the hospital and after Donna laundry, a late bite and a short Blog, thats all I can do but fall into bed. That being said I am good and doing just what I would choose. Hopefully that explains the lack of responses but all of your notes and support are so appreciated.
Here's looking forward to a good day tomorrow.
Bob
The good attitude extended through the day with good sessions. Emily, Donna's Speech therapist is doing another swallow test tomorrow am and if well Donna's food options will be expanded. Alleluia as she doesn't like many of the options now. Lets hope she passes.
The highlight of my day was this evening when Donna had eaten all she wanted and since I hadn't had lunch or dinner I asked her if she wanted to go to the cafeteria. In the evening it is empty. I got some food and she and I sat at a table and had the closest thing to a meal together we've had in 2.5 months. It was awesome. We talked and I ate. The best part was at the end when I told her I had enough and she said she wanted to be sure I had enough, and encouraged me to bring it with me. I passed but it was not lost on me that for the first time in a long time, she was trying to take care of me. I loved it and we will have that date again. you can bet on it.
As I have said many times, sorry for the poor response to so many of you. My days run 7 am to 9:30 pm at the hospital and after Donna laundry, a late bite and a short Blog, thats all I can do but fall into bed. That being said I am good and doing just what I would choose. Hopefully that explains the lack of responses but all of your notes and support are so appreciated.
Here's looking forward to a good day tomorrow.
Bob
Tuesday, August 21, 2012
Tuesday August 21
Oh what a difference a day makes. Yesterday Donna ad I were both exhausted after nighttime antics on her part, but after my solid nap and an outstanding night sleep for the two of us, we are back on track. I owe a huge debt of thanks to some special people and the right medication for Donna.
Donna had some residual medical moments but they didn't keep her from flaunting her well rested attitude at therapy. Her PT therapist, Laura, has a problem with her because no matter what the instruction, Donna wants to stand. Its like she believes that she knows more than Laura and sees standing as the fastest path to running. Sorry but I bet on Laura. Either way it is great to see her stand and her drive is awesome too. She spent her occupational therapy working on a puzzle of the US. she did pretty well but down the stretch she gets tired. We see a little more every day but still a way to go.
She'll be getting a new chair tomorrow as she has improved out of her current one. Words we love to hear. The right arm moves just a little more every day. I ask Donna to move her fingers, elbow and arm everyday for me and even she notices the difference. When she doesn't know I'm looking, she works it with her good left arm. She knows it needs to move, even if it hurts.
I had sent to me today an article on the 45 lessons for life. There were a few that I realize I really have learned in the last few months or learned more deeply. Here are a few that hit close to home:
- Life isn't fair but its still good
- Cry with someone, its more healing than crying alone
- Its OK to let your children see you cry
- Everything can change in the blink of an eye, don't worry the Almighty doesn't blink
- Whatever doesn't kill you, does make you stronger
- When it comes to going after what you love in life, don't take no for an answer
- Time heals everything, give time time
- Believe in miracles
- If we took all of our problems in a pile and saw everyone else's, we would grab ours again
- The best is yet to come...
Have a great day. I'll spend mine with my girl and I'll take that any day.
Bob
Monday, August 20, 2012
Monday August 20
This will be a short post as I need the sleep. Donna's nocturnal activities had me at the hospital last night. She's fine but her sleep patterns aren't. Needless to say that she got very little sympathy from me today as she kept claiming to be tired. Despite all that, she continues to make progress in her therapies. Thankfully I was able to get away for a few hours this evening and took an amazing solid nap.
Donna's strength grows every day and her ability to balance and condition some of her important muscles improves. Sometimes it is hard to see day to day but it is happening. I remember her first therapy sessions in order to gauge the difference. We move through the daily routine and days seem the same, but the challenges grow. Despite her fatigue, she works hard in her session.
Not a lot new to say today so I will sign off. Donna and her new short haircut were the toast of the floor. Everyone noticed and she looks good.
As we work through the repeated routine, don't lose heart if I don't post every day. I'll try but it gets hard. I'll be sure to keep posting on some regular basis.
Good Night
Bob
Donna's strength grows every day and her ability to balance and condition some of her important muscles improves. Sometimes it is hard to see day to day but it is happening. I remember her first therapy sessions in order to gauge the difference. We move through the daily routine and days seem the same, but the challenges grow. Despite her fatigue, she works hard in her session.
Not a lot new to say today so I will sign off. Donna and her new short haircut were the toast of the floor. Everyone noticed and she looks good.
As we work through the repeated routine, don't lose heart if I don't post every day. I'll try but it gets hard. I'll be sure to keep posting on some regular basis.
Good Night
Bob
Sunday, August 19, 2012
Sunday August 19
Donna had a rough day, her medication of food mix sure didn't agree with her. It may have also had something to do with no sleep. She apparently is still trying to drive her roommate away through late night antics but the lady is made of tough stuff.
The highlight of the day was the gracious visit of Donna's normal hairdresser who gave her a long overdue cleanup. She looks so cute in her new short haircut. Also thankfully she will no longer be subjected to male braids and pony tails. She did a great job.
Donna's nurse told me later today that apparently Houdini is at it again. Donna has a strapped cut cast she is to wear every night. She has decided she doesn't like it and apparently last night figured out how to get out of it one handed using her left. If it wasn't bad enough that she did it (multiple times might I add) she smirked about it when asked. Tonight I told the nurse in her presence that I had secured it such that she couldn't get it off, Donna's comment was "don't be too sure". Brat.
I hope she sleeps because we are on to week 3 therapy and everything gets tougher.
Bob
The highlight of the day was the gracious visit of Donna's normal hairdresser who gave her a long overdue cleanup. She looks so cute in her new short haircut. Also thankfully she will no longer be subjected to male braids and pony tails. She did a great job.
Donna's nurse told me later today that apparently Houdini is at it again. Donna has a strapped cut cast she is to wear every night. She has decided she doesn't like it and apparently last night figured out how to get out of it one handed using her left. If it wasn't bad enough that she did it (multiple times might I add) she smirked about it when asked. Tonight I told the nurse in her presence that I had secured it such that she couldn't get it off, Donna's comment was "don't be too sure". Brat.
I hope she sleeps because we are on to week 3 therapy and everything gets tougher.
Bob
Saturday, August 18, 2012
Saturday August 18
We plow forward.
At the end of week 9, we feel the medical
clearances of the last few days will hopefully lead to material change in the
next week. Donna's head continues to heal and it exhausts her quickly.
Her right arm is still only now beginning to move but very small
additional improvements seem to happen every day. Her quick mind finds
the frustration of the painfully methodical speech therapy, difficult to
endure. Truth is though she needs the work and the therapists are
extremely patient. We've seen many but I have to say that her assigned
therapist, Emily, we like the best.
The brain is an amazing thing.
Donna's is working hard to bring her functionality back. It takes a
lot of rest and a lot of frustrating engagement to reestablish it. She
gets through the work routine here everyday but it is a bit of a crash and burn
thing. Food by mouth for her has not really taken off. Limited
mobility creates some issues that make the process of eating
pretty unappealing. Add to that the bland fare she gets at this stage,
and I can't blame her. I tend to taste it all to try and select better
choices for her and I have to say that her taste assessments are generally
pretty spot on.
On this Saturday of week 9, I find myself
thinking of the really simple things I long for. Top of my list is a quiet day at home with my wife and children. Ironically I asked Donna the same question today and she said the same thing. Easy to understand. She just wants to be home.
A funny but true comment came from Donna's
mouth yesterday. We were sitting outside with her mother and telling a
few stories. I asked her if she was enjoying sitting there talking and
she said "would be fun if I had some stories to tell". We all
know how much she likes to sit, visit and tell a good story. She realized
all the stories belonged to other people right now. Well, add to that
list of simple wishes Donna armed with a good story and enjoying the telling
fully.
It will come. We can feel it now.
We just don't know how long the journey.
Thanks to all from here at TIRR.
Bob
Friday, August 17, 2012
Friday August 17
Its the end of a very long day so this will be a short note.
Thanks to all for the many prayers. Donna's Orthopedic Surgeon today gave her the clean bill to full weight bearing. Not only did he say that both of her surgeries were well healed, he altered her Therapy Prescription to "Aggressive". He said she could do anything TIRR offered and that his expectation was that when she returned in 60 days for a follow up, that he expected her to walk in. Awesome. More than I could have even dreamed.
We wasted no time in therapy this afternoon and she stood in both of her more active sessions. Our prior method of transfer from bed to chair is now obsolete as she can stand on both feet to swivel. awesome. Our problems are rapidly shifting from weight bearing limitations to safety for a girl who wants to move too fast. Limiting her actions till she is actually ready will be hard but a good problem.
Her night time physical adjustment paraphernalia is growing rapidly to make the appropriate adjustments. She has a removable cast to add to her right arm splint and in the next few days she will add splints to her ankles. These are all designed to get her to the form necessary for more complex tasks. Inactivity is nasty on the body. She hates these. Its pretty easy to understand. Right now it is hard for her to look beyond today but things are getting better. Please shift your prayers over in that direction. She and I both need patience.
Finally, I want to apologize to all those who have made great offers, asked for my time, or just wanted some of Donna's. I'm sorry but this time of high activity and transition is not that time. It does not reduce the extreme level of appreciation I have for the concern and love. Thank you. The time will come.
Thanks to all
Bob
PS BTW if you thought the roommate would be gone in less than 24 hrs, this one proves tougher. we continue on
PS BTW if you thought the roommate would be gone in less than 24 hrs, this one proves tougher. we continue on
Thursday, August 16, 2012
Thursday August 16
Today was a rough day. In some ways it was normal, same therapy regime, same mechanics but what makes it hard is when we go through some frustration periods. They are so understandable. This afternoon Donna decided she wanted to walk and would not take "no" for an answer. Those who know her well know that our girl is not to be denied. It was difficult and frustrating for both of us. I just keep telling myself that those limited times of her frustration are minor compared to what I would be doing. Patience, Patience, Patience. We got through it.
Having just chased off a roommate, we got another today. Not sure what the betting line is that she can make 24 hours.
In therapy Donna was on to sit-ups today. That sounds simple but it sure wasn't for her and builds strength in those important ab muscles she needs for so many other tasks. Her meds were modified yesterday and they have resulted in some clearer times. Unfortunately when they wear off she can be testy. All part of the process. Her good friend James was gone today and we had a nice lady therapist as his replacement. I was a bit apprehensive because she was really sweet but Donna really liked her and told her early that she understood the "pluses and minuses". She smiled through the minuses and I had to commend the young lady on her methods. We didn't get as much done as with James but Donna was happier.
We need lots of prayers for our orthopedic doctor appointment tomorrow. We so hope Donna gets cleared to stand on her left leg. I know it will be for a good reason if not and we want what is best for her but keeping her off of it may have to involve hog tying. Please Lord help us here. Prayers are appreciated.
See Ya
Bob
Having just chased off a roommate, we got another today. Not sure what the betting line is that she can make 24 hours.
In therapy Donna was on to sit-ups today. That sounds simple but it sure wasn't for her and builds strength in those important ab muscles she needs for so many other tasks. Her meds were modified yesterday and they have resulted in some clearer times. Unfortunately when they wear off she can be testy. All part of the process. Her good friend James was gone today and we had a nice lady therapist as his replacement. I was a bit apprehensive because she was really sweet but Donna really liked her and told her early that she understood the "pluses and minuses". She smiled through the minuses and I had to commend the young lady on her methods. We didn't get as much done as with James but Donna was happier.
We need lots of prayers for our orthopedic doctor appointment tomorrow. We so hope Donna gets cleared to stand on her left leg. I know it will be for a good reason if not and we want what is best for her but keeping her off of it may have to involve hog tying. Please Lord help us here. Prayers are appreciated.
See Ya
Bob
Wednesday, August 15, 2012
Wednesday August 15
Well we lost another roommate. Oh well.
Donna with some medication changes had a very aware day. She got got up on a tilt table today and was able to stand on her right leg for about 30 min. Its a table that starts flat and then inclines holding you so you can bear the weight safely. It was great to see. Her therapist said that based on her performance we'll move on to more challenging apparatus. We have the all important appointment with her orthopedic surgeon on Friday am and we pray she be released for weight on her left side. We spend all of our time now trying to fight her from standing on it. If we get the green light, we'll move to the next level. That leg is very strong and just begging to get off the bench and into the game.
She planted petunias this morning in her garden group, and she was quite proud although the Physical therapy folks couldn't figure out where the dirt kept coming from on the tilt table. Oops....
Sleep early today so see ya
Bob
Donna with some medication changes had a very aware day. She got got up on a tilt table today and was able to stand on her right leg for about 30 min. Its a table that starts flat and then inclines holding you so you can bear the weight safely. It was great to see. Her therapist said that based on her performance we'll move on to more challenging apparatus. We have the all important appointment with her orthopedic surgeon on Friday am and we pray she be released for weight on her left side. We spend all of our time now trying to fight her from standing on it. If we get the green light, we'll move to the next level. That leg is very strong and just begging to get off the bench and into the game.
She planted petunias this morning in her garden group, and she was quite proud although the Physical therapy folks couldn't figure out where the dirt kept coming from on the tilt table. Oops....
Sleep early today so see ya
Bob
Tuesday, August 14, 2012
Tuesday August 14
Well our sleepy girl caught a break today. No therapy till 10 am. As a result she slept in till almost 9. as one of the staff put it, we spoiled her. Her right arm cast was cut off today to be made into what they call a "bivalve". not what you think. It essentially is a splint that goes on her arm every night (looks like the cast, but only at night). Hers will also be fitted with a custom piece of foam which will keep the arm separated away from her body. She may hate it but it works so well. It's still under construction and she'll get it officially tomorrow.
James, her friendly occupational therapist, is the constructor and today he stretched Donna's arm well farther than it has gone yet. Needless to say her reaction resembled what a condemned person on a "Rack" must have experienced. Big yells and cries. At one point she told James she wanted to hit him and those of you that know her well can imagine what force that serious threat carried. She meant it. During these sessions my role is to hold her now ferocious left arm, essentially saving James from major harm. The coolest thing is to see her say as she leaves the room that she feels better and that James is nice. Talk about a change of heart.
As I have mentioned him several times let me tell you a bit more about James. He is about 28-30 years old, medium build and lean. He is totally dedicated to perfection with a good bit of mechanical insight. you should see him rip apart a chair or build something. He and I have talked about his childhood which was filled with erector sets and lincoln logs. A man after my heart. Most of all he is incredibly knowledgable about what he is doing and is driven to perfection. Add to that perfection a clear soft spot in his heart for Donna and you get a great partnership. He self proclaims to be bad at math and not to be able to dance a step, so Donna has graciously agreed to tutor him when she is well. James is a man of faith exemplified by the silicon bracelets he wears. My favorite is "God is big enough". I've decided to take this one on myself. What a great mix of skills, compassion and values James is. He is one of our great blessings. Donna sees him every day Monday - Friday.
Donna got a new room mate this evening. We'll see in the morning if she has chosen to drive her away. The last one survived only 1 night.
Goodbye for now....
Bob
James, her friendly occupational therapist, is the constructor and today he stretched Donna's arm well farther than it has gone yet. Needless to say her reaction resembled what a condemned person on a "Rack" must have experienced. Big yells and cries. At one point she told James she wanted to hit him and those of you that know her well can imagine what force that serious threat carried. She meant it. During these sessions my role is to hold her now ferocious left arm, essentially saving James from major harm. The coolest thing is to see her say as she leaves the room that she feels better and that James is nice. Talk about a change of heart.
As I have mentioned him several times let me tell you a bit more about James. He is about 28-30 years old, medium build and lean. He is totally dedicated to perfection with a good bit of mechanical insight. you should see him rip apart a chair or build something. He and I have talked about his childhood which was filled with erector sets and lincoln logs. A man after my heart. Most of all he is incredibly knowledgable about what he is doing and is driven to perfection. Add to that perfection a clear soft spot in his heart for Donna and you get a great partnership. He self proclaims to be bad at math and not to be able to dance a step, so Donna has graciously agreed to tutor him when she is well. James is a man of faith exemplified by the silicon bracelets he wears. My favorite is "God is big enough". I've decided to take this one on myself. What a great mix of skills, compassion and values James is. He is one of our great blessings. Donna sees him every day Monday - Friday.
Donna got a new room mate this evening. We'll see in the morning if she has chosen to drive her away. The last one survived only 1 night.
Goodbye for now....
Bob
Monday, August 13, 2012
Monday August 13
Well Donna is into week two of therapy. It takes a toll and it shows in fatigue. She has had 2 good nights sleep and two naps yesterday and despite all that, she could barely keep her eyes open today with the exception of her two more physical therapies (physical and occupational). They give her no choice.
Donna went to specialized therapy this morning, garden group, where we go outside and pull weeds and water plants in some special (wheelchair friendly) beds. When she shook off the sleep, she got her hands dirty, literally. She loves to garden so this was great.
There is no doubt that she is getting much stronger. She is now able to pull herself up to a sitting position with some effort. Those abs are strengthening, their development are an important ingredient to much more we need Donna to do.
So, I spend a lot of time in this space talking about the exciting. There are more difficult times. Donna spends her time moving between 3 areas: sleep, clarity and confusion. I don't think I need to talk about the first 2. Confusion comes from a combination of the healing that has not yet happened and the jump she gets from stimulants provided. All geared to enhance the healing process but some times it makes her more confused. Each day is a variation on theme. We go through days when clarity steadily increases and we go through days when we step back a little. Overall the trend is good but the instantaneous can be very hard on us all. Day to day, hour to hour, we don't quite know what we will get. Patience is the rule of the day.
So on a lighter note, I am always trying to make a connection to something for her and do a little therapy too. Today I brought some real toe tappin cajun music and we danced. Well it wasn't quite like before, she sat in her chair and I stood but it took her mind off the fact that I was stretching the heck out of her tight right arm. It was great while she tolerated it. We'll revisit this later. Those who have been with her on a dance floor know this was just the ticket. We'll have to take a break for a few days as her good friend James decided that he was fixing her right arm now and casted it today. We'll cut it off in two days and it will serve as a splint she will wear at nights after. For you LSU fans, it is a brilliant purple. Not a coincidence, it is almost football season. I did pledge though that if she gets another cast and I have any say it will be black and gold.
We persevere,
Bob
Donna went to specialized therapy this morning, garden group, where we go outside and pull weeds and water plants in some special (wheelchair friendly) beds. When she shook off the sleep, she got her hands dirty, literally. She loves to garden so this was great.
There is no doubt that she is getting much stronger. She is now able to pull herself up to a sitting position with some effort. Those abs are strengthening, their development are an important ingredient to much more we need Donna to do.
So, I spend a lot of time in this space talking about the exciting. There are more difficult times. Donna spends her time moving between 3 areas: sleep, clarity and confusion. I don't think I need to talk about the first 2. Confusion comes from a combination of the healing that has not yet happened and the jump she gets from stimulants provided. All geared to enhance the healing process but some times it makes her more confused. Each day is a variation on theme. We go through days when clarity steadily increases and we go through days when we step back a little. Overall the trend is good but the instantaneous can be very hard on us all. Day to day, hour to hour, we don't quite know what we will get. Patience is the rule of the day.
So on a lighter note, I am always trying to make a connection to something for her and do a little therapy too. Today I brought some real toe tappin cajun music and we danced. Well it wasn't quite like before, she sat in her chair and I stood but it took her mind off the fact that I was stretching the heck out of her tight right arm. It was great while she tolerated it. We'll revisit this later. Those who have been with her on a dance floor know this was just the ticket. We'll have to take a break for a few days as her good friend James decided that he was fixing her right arm now and casted it today. We'll cut it off in two days and it will serve as a splint she will wear at nights after. For you LSU fans, it is a brilliant purple. Not a coincidence, it is almost football season. I did pledge though that if she gets another cast and I have any say it will be black and gold.
We persevere,
Bob
Sunday, August 12, 2012
Sunday August 12
A rough slow day. Donna rested and dealt with some medical issues that should hopefully be sorted. I'll defer tonight. onward to therapy week 2.
Bob
Bob
Saturday, August 11, 2012
Saturday August 11
Well, it has been 8 weeks today since the accident. The kids and I have designated Saturdays as our day of reflection as they tend to be slower and mark the conclusion of another week. We try to think about our blessings and look closely at Donna relative to the beginning to fully appreciate her progress. This week has been hard for her. The biggest change was the stress of being more aware but with limitations. This frustration is greater than you can imagine and thank God she is an amazingly strong woman. It has also been difficult moving from a 20 min/day therapy session to 3-4 hours per day. Donna spent those prior 20 min/day therapy sessions sitting but that was all the sitting she did. Now she sits in her chair or sits/stands at therapy 8 hours per day. Big change, big stress but big value. This is so good for her and that makes the difficult moments manageable.
After 6 weeks of coma and now about 2 weeks awake, we count our blessings. Her legs are progressing well. Left is very strong and she is chomping at the bit to stand on it (lets hope this is the week she is allowed). Her right leg is still slower but has progressed well enough for her to be standing on it (with lots of help) this week.
Donna's left arm is beyond fully functional, it has a death grip. Its the limb she has been tormenting us with for weeks. Great to see. Her right arm is the slowest. She moves it only ever so slightly but tingling is happening in it now which is good sign. We feel pretty confident it is coming. Not surprisingly though the right arm and shoulder (this is the operated on arm) is the tightest muscularly and gets lots of attention from her therapists. She and James, her occupational therapist, are locked in a love/hate relationship. He helps (hurts) her, she yells and grabs him by the jersey (yesterday she grabbed his hair) but afterward she smiles and acknowledges how much he helps her. James is awesome and one of our great blessings.
Donna's head is full of knowledge, recognition, and some confusion. There are so many good areas but there are also areas that need to heal and be enhanced. The staff all tell us that what we see is normal, but our girl is used to having superhuman mental capacity. We are patient but Donna is not. She wants to do more, heal faster and make it better. Today was special as I was able to explain to her that she was in a coma for 6 weeks. Her eyes were very wide. She had no idea and it was suddenly clear to her that so much has gone on than she realized. We have so much more to tell her but all in good time. The little we did tell her about the care and love brought a big smile to her face and she said several times "that's so good, that's so good".
So on this week 8 Saturday I want to share just a few things I have learned (or have had reinforced).
- I love Donna more than even I knew
- It is amazing how little you need to be happy
- It is incredible how warm the feeling of those that love you can make you feel
- Patience really is a virtue and it is true that all the good things in life are worth waiting for. (and amazingly patience can be learned)
- All things are possible in God's time, way and understanding. Faith is a truly beautiful thing.
We struggle here but we thrive. After 8 weeks we could go 80 more if necessary to get our girl home.
Thanks to all
Bob
This is published early so many (including me can get to bed). Woo Hoo
Friday, August 10, 2012
Friday August 10 by John
Well today finished off my mom's first week of therapy, and it seems to be both exhausting and beneficial. Over the weekend there won't be as much therapy, so she'll get a bit of a break.
Yesterday night some people brought around three dogs to visit, which my mom clearly enjoyed thoroughly. She spent some time petting a small furry one and then a black lab performed some tricks for her. We're all dog people, so we all had a really great time. They come by every Thursday, so we're looking forward to seeing them again next week.
I've gotten a couple questions about whether she's still in a coma. While I'm certainly not an expert and haven't had a doctor's opinion on the subject, I think it's safe to say that she doesn't really fall under the category of "coma" anymore. She would probably score very high on the Glasgow Coma Scale, which we've reference before, but it's not really a very useful measure of her degree of consciousness at this point. She has many periods throughout the day of talking to us, and she's improving daily, but there's still a rather long road ahead of us. She still dabbles in talking in numbers and sometimes gets fixated on certain words/phrases. Every day it seems like she manages to stay focused and have more meaningful interactions just a little more than the day before. Today she did better than yesterday, and hopefully tomorrow will be better than today.
John
Thursday, August 9, 2012
Thursday August 9
The source of Donna's fatigue appears to not be medication but (duh) a lack of sleep. Apparently she has taken on some of her brother Brian's habits and has become a night owl. Thankfully she has avoided some of his other habits. We'll know soon if it the fatigue is easily solved. After sleeping till 10:45 am, she got into the therapy scene but kept trying to sleep.
Big news from today is that both she and I have had yellow arm bands added to our wrists. These allow me to take Donna off the floor and to take her outside. Clearly I have fooled these people with the appearance that I am a responsible person. We took 3 trips out today and Donna seemed to enjoy herself. It really breaks things up after therapy and before we want her to go to sleep. Her strength continues to grow as she continues to battle with frustration, boredom and and improved orientation. She still has an uncanny way of smiling, calling someone's name or saying goodbye with a wave that wins over hearts. That's Donna.
Today during a brief visit from my parents, I told her that they had decided to stay for 2 years. She scrunched up her face and stuck out her tongue. She hadn't delved into the realm of humor to this point, so there was a pregnant pause as we all looked at each other. Then with a little smile from her, we all knew that the humor was back. I was quick to tell her it was a joke but, I believe it was unnecessary. Her only comment was an unfiltered "Too long" and a smile.
All her sleep put her in a much better humor (whew...). She yells at the pain of the therapy but really seems to understand the gain. She knows she is getting better but as we were sitting outside under the trees this evening and I pointed out the window of her room, she said "Being here is torture". I know we can all appreciate that. It may be torture but it is awesome torture that leads to the end of the rainbow.
Onward
Bob
Big news from today is that both she and I have had yellow arm bands added to our wrists. These allow me to take Donna off the floor and to take her outside. Clearly I have fooled these people with the appearance that I am a responsible person. We took 3 trips out today and Donna seemed to enjoy herself. It really breaks things up after therapy and before we want her to go to sleep. Her strength continues to grow as she continues to battle with frustration, boredom and and improved orientation. She still has an uncanny way of smiling, calling someone's name or saying goodbye with a wave that wins over hearts. That's Donna.
Today during a brief visit from my parents, I told her that they had decided to stay for 2 years. She scrunched up her face and stuck out her tongue. She hadn't delved into the realm of humor to this point, so there was a pregnant pause as we all looked at each other. Then with a little smile from her, we all knew that the humor was back. I was quick to tell her it was a joke but, I believe it was unnecessary. Her only comment was an unfiltered "Too long" and a smile.
All her sleep put her in a much better humor (whew...). She yells at the pain of the therapy but really seems to understand the gain. She knows she is getting better but as we were sitting outside under the trees this evening and I pointed out the window of her room, she said "Being here is torture". I know we can all appreciate that. It may be torture but it is awesome torture that leads to the end of the rainbow.
Onward
Bob
Wednesday, August 8, 2012
Wednesday August 8
A difficult and busy day for Donna. After not sleeping well, Donna continued to have some medication issues that kept her tired through the day. Despite the fatigue and frustration, Donna had some great therapy sessions.
In PT she got her cast off and proceeded (with help) to stand on her good but slow right leg. I was amazed and so was she, when she got up there she stood tall and smiled big. After doing it a second time she didn't want to sit down she was so proud. After 3 she was exhausted but satisfied. She needs to stand on only one leg because the other leg (left) is still not weight bearing from her surgery. The plan was 8 weeks for no weight. She had an appointment Monday that I was looking forward to for a possible early release. That appointment just slid to at least next Friday, patience needed again.
Donna also struggled through a tough but beneficial therapy session that stretched out her tight shoulder substantially. The splint for her hand has already begun to do wonders.
Her schedule gets more full and now borderlines crazy. Between her frustration and fatigue make it all a challenge, the blessing is that she continues to get better every day even if small.
Well I wasn't there last night but Donna apparently talked her roommates ear off. We came back from a session after lunch today and she was gone, moved to another room. Clearly the lady didn't get a dose of the magnetic personality we know Donna has but then again, maybe Donna had other motives. We'll never know.
Bob
In PT she got her cast off and proceeded (with help) to stand on her good but slow right leg. I was amazed and so was she, when she got up there she stood tall and smiled big. After doing it a second time she didn't want to sit down she was so proud. After 3 she was exhausted but satisfied. She needs to stand on only one leg because the other leg (left) is still not weight bearing from her surgery. The plan was 8 weeks for no weight. She had an appointment Monday that I was looking forward to for a possible early release. That appointment just slid to at least next Friday, patience needed again.
Donna also struggled through a tough but beneficial therapy session that stretched out her tight shoulder substantially. The splint for her hand has already begun to do wonders.
Her schedule gets more full and now borderlines crazy. Between her frustration and fatigue make it all a challenge, the blessing is that she continues to get better every day even if small.
Well I wasn't there last night but Donna apparently talked her roommates ear off. We came back from a session after lunch today and she was gone, moved to another room. Clearly the lady didn't get a dose of the magnetic personality we know Donna has but then again, maybe Donna had other motives. We'll never know.
Bob
Tuesday, August 7, 2012
Tuesday August 7
A pretty busy day here.
Donna had a very full schedule of sessions but they were overly impacted
by a desire to better control her pain.
Our “one glass of wine “ girl also has the same reaction to pain
medication, she participated without pain but she wasn’t quite in the moment. One of her therapists made her a new splint
for her right hand. It really looks like
it is helping already.
Day two of eating was better than I expected, she tried a
lot and managed to eat a small bit of her lunch.
There was an eagerness there that was great to see. Early days but positive signs.
Donna’s full team gathers together on Tuesdays and plans
their objectives for the next week as well as look long term toward prospective
discharge timing. Very rough but those
of us from the business world can understand how this keeps the team unified
and focused toward objectives. No wonder
TIRR is such a world-class facility.
There is no doubt these people know what they are doing.
Donna’s roommate appeared today and seems like a nice
lady. Our short period of privacy is a
bit reduced.
I don’t have any good anecdotes to provide today so I’ll
share a few facts (for all you nerds out there, I think we know more than most.
What does that say about us?). Here are some swallowing facts I learned in the last
day. It takes 52 muscles to swallow and
if you don’t swallow for 3 days, the muscles and the important reflexes
involved will begin to atrophy. As you
can imagine this is a big deal for someone like Donna. Her swallow was well above expectations (gee
who could have seen that coming) and the best way for her to get to 100% is
practice with safe foods. She is doing
great here.
Donna gets a little better every day but a long haul
left. Every day she has said that it
doesn’t feel like she’s getting better (I don’t think she remembers
much of the first 6 weeks). The TIRR
folks really do perform magic and I think today for the first time, she
actually realized that what we have been telling her about improvement might
actually be happening. She probably will
forget about that tomorrow, as she is as demanding of her support team as she is of the
students she has taught. One of the
phrases I have loved so much is when she often says in response to praise, “I
can do more”. We know this is absolutely
true. Praise God.
Bob
Monday, August 6, 2012
Monday August 6
A big day of progress and frustration.
Progress for Donna came as the result of a great swallow test and all of the sudden she can eat select foods. Donna's appetite will be a bit slow in returning but clear progress. Her busy schedule saw physical therapy sessions where her right ankle was casted (they use it as a means to reestablish muscle tone) and a complete rebuild of her chair. Later today Donna finally got her shot at real food and clearly indicated hospital food was not up to her cooking standards.
Donna survived the night alone well and this will be our new model to allow me to manage a full day with her. It is a long day but a very busy one also. We don't spend much time in her room anymore. Tomorrow we get a roommate so the dynamics will change a bit.
The frustration comes when a bright and capable person can't do what she wants. Donna is ready to be better and struggles with the pace of progress. I think all of us can relate. It is particularly hard for me too as I so want to help her but can only do so much. We relish the progress but struggle together. I know several have expressed a desire to visit us but it really makes it a bad time. With the pace of activity, the time away from the room, the fatigue and the frustration, it takes all we have to get through the day. These are the dog days and we have little opportunity for distraction.
So on a lighter note, in my haste to get something to eat on the fly today, I munched on some onion garlic pistachios. A little later with several of the staff in the room, Donna proceeded to announce that my breath smelled bad. As usual, she was spot on. I corrected the situation with some gum. Clearly her diplomacy is back in full working order.
Bob
Progress for Donna came as the result of a great swallow test and all of the sudden she can eat select foods. Donna's appetite will be a bit slow in returning but clear progress. Her busy schedule saw physical therapy sessions where her right ankle was casted (they use it as a means to reestablish muscle tone) and a complete rebuild of her chair. Later today Donna finally got her shot at real food and clearly indicated hospital food was not up to her cooking standards.
Donna survived the night alone well and this will be our new model to allow me to manage a full day with her. It is a long day but a very busy one also. We don't spend much time in her room anymore. Tomorrow we get a roommate so the dynamics will change a bit.
The frustration comes when a bright and capable person can't do what she wants. Donna is ready to be better and struggles with the pace of progress. I think all of us can relate. It is particularly hard for me too as I so want to help her but can only do so much. We relish the progress but struggle together. I know several have expressed a desire to visit us but it really makes it a bad time. With the pace of activity, the time away from the room, the fatigue and the frustration, it takes all we have to get through the day. These are the dog days and we have little opportunity for distraction.
So on a lighter note, in my haste to get something to eat on the fly today, I munched on some onion garlic pistachios. A little later with several of the staff in the room, Donna proceeded to announce that my breath smelled bad. As usual, she was spot on. I corrected the situation with some gum. Clearly her diplomacy is back in full working order.
Bob
Sunday, August 5, 2012
Sunday August 5
Well I know that I said that updates may be less frequent
but the pace of activity and the desire for info has compelled us to maintain a
daily message at least for now. Lets see
what is possible with upcoming changes.
As we have learned over the 7 weeks of this journey with
Donna, Sundays are a day of rest and a great time to reflect on progress. Donna had a rare Sunday speech therapist
session as they are trying to complete her evaluation. Despite the fact that she does well in
answering questions, she gets so frustrated that they keep asking simple
questions and even more so that sometimes the answer alludes her. Despite our assurances that this is the way
to progress, she remains unconvinced.
We’ll get through it. She wants
it all to happen faster and we understand and agree. She continues to get better but as she becomes
more aware, impatience shows up. Imagine
me trying to console her on the subject of patience?? Never thought I would see the day.
The Sunday calm will lead us to some big changes on
Monday. First, her therapists will come
at her full force starting tomorrow and our entire support model is changed. Sarah is gone, and Donna will be down to one primary supporter/cheerleader during the
day starting tomorrow, me. She may not
notice as her busy therapy schedule ramps up.
She started the process of sleeping alone tonight. As she has been a great all night sleeper,
this shouldn’t be a big problem. I
expect she will be trying to catch some shuteye between sessions but this may
be limited. Also tomorrow or Tuesday she
will have a comprehensive swallow test that will determine her ability to
eat. Indications are that she is ready
and this will be a major milestone in her improvement. The other big milestone comes a week from now
when she will see her orthopedic surgeon and will hopefully get a go ahead to
bear weight on her left side. That will give the folks here the green light to
go full bore toward walking. That is a
way off but we relish the potential challenge.
It was incredibly hard for me to leave her tonight, but an
early start tomorrow takes us into the next important leg of the journey. She was trying to sit up and get up out of
bed tonight. She is chomping at the bit
to get there. We know the TIRR team is
up to the challenge.
Bob
Saturday, August 4, 2012
August 4 From Sarah
Today was relatively low key, as therapy is usually only on the weekday agenda; however, my mom did receive a visit from physical therapy first thing this morning, followed shortly thereafter by speech therapy. During PT, we stood my mom up 2 times. It wasn't exactly a smooth operation, but as we learned with our first attempts at sitting, it's never too early to start trying. Transporting my mom and standing her up are particularly difficult right now because my mom is still non-weight bearing on her left leg. Therefore, we have to hold her left leg to stop her from pushing off of it, and it's not exactly fair to judge her ability to stand when she can only be one-footed. When speech therapy came soon after PT, my mom was a little worn out. She still did very good, but was a little less spunky than she was yesterday. Some of the things they do in speech therapy, for example, go something like this:
"Donna, what do you write with?" ..."a pen."
"What do you tell time with?" ..."a clock."
"If your husband was cutting down a tree and it fell on a power line, why would that be bad?" ..."it would kill the power."
"Good, why else? What would happen if your husband touched it" ..."it would hurt him."
"Yes, so who would he call?" ..."me."
"Ok, and who would you call?" ..."the power company."
As you can imagine, these sessions make us very proud of her.
We get a lot of questions from the staff here about my mom's profession due to her constant talk of math. Apparently numbers aren't the most common crutch words used when a person first wakes up from a coma....they say that cuss words are far more popular. We're not exactly shocked that numbers come more easily to my mom than cuss words. Nevertheless, the therapists have started training us, and we've been told that we need to not support the use of math as a word filler. Another common word from my mom is "help." At first, this was extremely anxiety provoking for us, as we desperately wanted to help her immediately. We learned that help was not always needed, however, and we had to stop doting on her when we were unable to find a way in which she truly needed help.
Something particularly funny that my mom said today was when she was shown an old picture of my dad among other old pictures of me from when I was a baby. My dad showed the picture to her and said something like, "Donna, I looked good huh?!" Despite being rather sleepy at the time, she said to him without missing a beat, "Yeah, 27 years ago." Everyone just sat in silence for a second as they tried to do the math in their head. I'm obviously giving away my age here, but she was dead on! It was a picture from 27 years ago. We thought it was hilarious.
Shortly after my mom's speech therapy session, she had an allergic reaction to an antibiotic that she was given. It was caught very quickly, but we had to give her Benadryl and it knocked her out for a huge chunk of the afternoon. I think the sleep she got was good for her, and we're glad that therapy hadn't been planned for this afternoon anyway, but we missed being able to talk with her more.
Now that the medicine has worn off a little, my mom has waken up a bit - on and off. It's just me and her tonight - my last night in town for a little while. She squeezed my hand tightly as we said a few prayers together. My mom was able to say most of the Hail Mary with me, but she kept asking me to repeat the Our Father. After we had said it about 3 times, she became very frustrated with the fact that she could not say it with me. We talked about how it's a long and difficult prayer, but I assured her that it will come back to her soon, as she was already saying some of the words with me. During this very clear time of understanding for her, I listed just a few of the many, many blessings that we have all received during this time. She listened closely and nodded. There have been scary and painful days for us all, and there are many more to come. But God has been so good to us.
"Donna, what do you write with?" ..."a pen."
"What do you tell time with?" ..."a clock."
"If your husband was cutting down a tree and it fell on a power line, why would that be bad?" ..."it would kill the power."
"Good, why else? What would happen if your husband touched it" ..."it would hurt him."
"Yes, so who would he call?" ..."me."
"Ok, and who would you call?" ..."the power company."
As you can imagine, these sessions make us very proud of her.
We get a lot of questions from the staff here about my mom's profession due to her constant talk of math. Apparently numbers aren't the most common crutch words used when a person first wakes up from a coma....they say that cuss words are far more popular. We're not exactly shocked that numbers come more easily to my mom than cuss words. Nevertheless, the therapists have started training us, and we've been told that we need to not support the use of math as a word filler. Another common word from my mom is "help." At first, this was extremely anxiety provoking for us, as we desperately wanted to help her immediately. We learned that help was not always needed, however, and we had to stop doting on her when we were unable to find a way in which she truly needed help.
Something particularly funny that my mom said today was when she was shown an old picture of my dad among other old pictures of me from when I was a baby. My dad showed the picture to her and said something like, "Donna, I looked good huh?!" Despite being rather sleepy at the time, she said to him without missing a beat, "Yeah, 27 years ago." Everyone just sat in silence for a second as they tried to do the math in their head. I'm obviously giving away my age here, but she was dead on! It was a picture from 27 years ago. We thought it was hilarious.
Shortly after my mom's speech therapy session, she had an allergic reaction to an antibiotic that she was given. It was caught very quickly, but we had to give her Benadryl and it knocked her out for a huge chunk of the afternoon. I think the sleep she got was good for her, and we're glad that therapy hadn't been planned for this afternoon anyway, but we missed being able to talk with her more.
Now that the medicine has worn off a little, my mom has waken up a bit - on and off. It's just me and her tonight - my last night in town for a little while. She squeezed my hand tightly as we said a few prayers together. My mom was able to say most of the Hail Mary with me, but she kept asking me to repeat the Our Father. After we had said it about 3 times, she became very frustrated with the fact that she could not say it with me. We talked about how it's a long and difficult prayer, but I assured her that it will come back to her soon, as she was already saying some of the words with me. During this very clear time of understanding for her, I listed just a few of the many, many blessings that we have all received during this time. She listened closely and nodded. There have been scary and painful days for us all, and there are many more to come. But God has been so good to us.
Friday, August 3, 2012
August 3, 2012 From Sarah
Our first full day at TIRR and things took off quickly. After a very good night, we woke my mom up at 8:45 to get her changed into clothes and ready for her first therapy session at 9. Patients wear their own clothes here, and not only did we love seeing my mom in a dress today, but we think she liked it very much, as well. Her first session this morning was a very simple evaluation to see if she could swallow - my mom aced this test. In fact, she will likely be having a more elaborate test next week to see how well she can start tolerating real food. This couldn't come at a better time, as she told us this evening that she wants to start eating food. After her short swallow evaluation, when we told my mom to say goodbye to the therapist, she said, "I feel like nothing was done." Little did she know, there was much more to come today. She made it clear all day long that she wants to get better, and we are thrilled about her motivation for action.
My mom's next speech therapy session at 10:30 knocked our socks off. My mom answered every question she was asked correctly, except for today's date. She knew her full name, which hospital she was in, her birthday… She knew how to finish common phrases that were started for her (like, "not up but" … "DOWN"; "not hot but" … "COLD"), and she scored a 100% on several quizzes she was given about stories that the therapist told her. My mom was amazing, and at one point, she told the therapist, "I can do more." She wasn't lying.
There were a few other visits today from physical and occupational therapists. We learned that my mom will be receiving a minimum of 3 hours of therapy per day. One of the therapists put her up in a wheelchair and we wheeled her around the hospital floor for a while. The therapist also took a lot of measurements and ordered a custom wheelchair to fit my mom's specific needs. This new chair was made for her within hours. Awesome. As you all know, my mom is quick to take care of others, and she has already offered to take care of her occupational therapist. When she told him that she needed to be able to do math, he told her that he was terrible at math. So my dad said, "Donna, will you teach him how to do math?" and she quickly said, "I'll try!"
We had a rare evening tonight when we all left the hospital to eat dinner together. When we got back to the hospital, my mom was dozing, but soon woke up for us. She had one of the longest and most aware periods I've seen from her yet. Now I know I only arrived here yesterday, but the changes in my mom during this short amount time have been drastic. During the time that she was very awake this evening, she said and did so many things with clear purpose. I can't possibly describe it all. She asked us how she was doing, she asked us to tell her if she was getting better or worse each day, she asked us what she did today and to tell her about it, she asked us how our afternoon was and listened attentively with many expressions about our dinner out…
Before I left the hospital tonight (my dad is staying with her), my dad told my mom the date today. Then he asked her if she knew what today was. She hadn't responded to this question yet today, but this evening, she responded by saying that it was my birthday. Correct! Then, when we asked her who else's birthday it was today, she said "George's" (my dad's dad). Right again! That may have been the best birthday gift she gave my grandpa, but believe it or not, it wasn't the best birthday gift she gave me today. She proceeded to ask us to let her know when it was time for her to sleep. So I responded by telling her that it was time for me to go home and go to sleep. Before I left the room, I said to her, "Mom. I love you." For the first time in 7 weeks, she looked up at me and said, "I love you too." I walked away bawling like a baby… the same way she brought me into this world :-)
Thursday, August 2, 2012
Thursday, August 2 From Sarah
So today was simply too eventful not to write about it.
Nate and I flew into Houston this morning, and despite my mom's sleepiness, she opened her eyes when she heard my voice, and smiled at me when she saw me. What a welcome. She remained sleepy throughout the majority of the morning, and I think it's important to remember that her periods of being awake are interrupted by many periods of sleepiness. My mom's therapy sessions were huge highlights of the day, however, and boy did she show off for me! She was talking a lot, and it's kind of funny because her vocabulary grows daily, but she substitutes a lot of words that she can't yet get out with algebraic terms. It's funny and cute to us, but it does become frustrating to her at times when she knows what she wants to say and can't. This will definitely be a hard part of the rehabilitation process for us all.
Now back to a few of today's joys... During speech therapy, my mom asked for a popsicle (which came in the form of sherbet in a cup). After getting a taste, she grabbed the spoon from the therapist and proceeded to feed herself a few bites. It wasn't perfect, but we all wanted to break out in applause. I can only imagine how good that must taste after nearly 7 weeks of tube feedings. Later, during physical therapy, my mom gave me a little to brag about to my brother during my few days in town, because when he was gone today, she referred to us each by our nicknames (Bud and Sis). She had refused to do this for John yesterday when he was with her, and again refused to do it for him when he returned to the hospital this afternoon. After he tried prompting her many times again today, she finally responded with (exasperated), "I call you JOHN!" We'll see how long I can brag about that one before she gives it up for him, but it's so nice to hear her say our names in whatever form they come. One last action I will share occurred when we were playing music for my mom during our 'family therapy' time. We played a song that, whenever she hears it on the radio, she calls me to tell me that it reminds her of me. During the song, she started belting out some of the lyrics! That song will forever remind me of her, too.
After a long afternoon that we became sure would no longer include a move to TIRR, we got the phone call. We sprung into action and our long awaited plans were all of a sudden happening. John saw my mom and I off from the hospital, I rode with her in the ambulance across town, and my dad was standing at the front door of TIRR waiting to welcome us. Let's just say, the nurses here were quickly introduced to my mom's entourage. We have been here for only a few hours now, but we are nothing but completely and totally impressed. My mom has already gotten an overwhelming amount of attention and she's even received her first real shower in 7 weeks. The equipment that they use here is so impressive that we called my brother with FaceTime just to show him! We are so thrilled to finally be here, and while we all clearly understand that the road ahead is long, we have no doubt that my mom will thrive here.
Nate and I flew into Houston this morning, and despite my mom's sleepiness, she opened her eyes when she heard my voice, and smiled at me when she saw me. What a welcome. She remained sleepy throughout the majority of the morning, and I think it's important to remember that her periods of being awake are interrupted by many periods of sleepiness. My mom's therapy sessions were huge highlights of the day, however, and boy did she show off for me! She was talking a lot, and it's kind of funny because her vocabulary grows daily, but she substitutes a lot of words that she can't yet get out with algebraic terms. It's funny and cute to us, but it does become frustrating to her at times when she knows what she wants to say and can't. This will definitely be a hard part of the rehabilitation process for us all.
Now back to a few of today's joys... During speech therapy, my mom asked for a popsicle (which came in the form of sherbet in a cup). After getting a taste, she grabbed the spoon from the therapist and proceeded to feed herself a few bites. It wasn't perfect, but we all wanted to break out in applause. I can only imagine how good that must taste after nearly 7 weeks of tube feedings. Later, during physical therapy, my mom gave me a little to brag about to my brother during my few days in town, because when he was gone today, she referred to us each by our nicknames (Bud and Sis). She had refused to do this for John yesterday when he was with her, and again refused to do it for him when he returned to the hospital this afternoon. After he tried prompting her many times again today, she finally responded with (exasperated), "I call you JOHN!" We'll see how long I can brag about that one before she gives it up for him, but it's so nice to hear her say our names in whatever form they come. One last action I will share occurred when we were playing music for my mom during our 'family therapy' time. We played a song that, whenever she hears it on the radio, she calls me to tell me that it reminds her of me. During the song, she started belting out some of the lyrics! That song will forever remind me of her, too.
After a long afternoon that we became sure would no longer include a move to TIRR, we got the phone call. We sprung into action and our long awaited plans were all of a sudden happening. John saw my mom and I off from the hospital, I rode with her in the ambulance across town, and my dad was standing at the front door of TIRR waiting to welcome us. Let's just say, the nurses here were quickly introduced to my mom's entourage. We have been here for only a few hours now, but we are nothing but completely and totally impressed. My mom has already gotten an overwhelming amount of attention and she's even received her first real shower in 7 weeks. The equipment that they use here is so impressive that we called my brother with FaceTime just to show him! We are so thrilled to finally be here, and while we all clearly understand that the road ahead is long, we have no doubt that my mom will thrive here.
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