Sunday, September 30, 2012
Sunday September 30
Well I noticed a strange thing this week, I have felt my stress level come down a notch. Its the combination of a stable well-cared for routine for Donna, no major decisions to be made for her and some preoccupation on my part (primarily in the form of work). There are still plenty of future issues that I still anguish a bit over but that will be the case till all is well. I think the bottom line is what I have told some of the people who have graciously allowed me to bend their ear; while Donna has a good way to go, she has crossed a minimum threshold that confirms for me that we will have a good life together. I didn't really know the stress was there but now that we have passed that point, I feel a good bit of relief.
Donna is good. While physically her therapy remains modest, the healing in her head is noticeable. Her awareness and clarity grows and our conversations get richer. She still struggles with very short term memory but even that is improving a bit. Her speech is still not quite normal but the clarity and engagement of it keep getting better. I have so enjoyed the conversations we have had over the last few days.
With Donna's honeymoon/evaluation period in Galveston now over, I'll be talking with them early this week how we step up the aggressive nature of some of her therapy. We like everything at this facility but we want a more focused, personally targeted approach. I'm optimistic we will get there with them.
Donna had a great weekend. We came to the medical center on saturday and did our now standard nap, cook, visit and laugh experience. Today we had a shopping experience for some things for her. It was great to finally get her involved; way too much pressure with me having to buy her things. We had a pizza lunch, watched the Texans football game and then topped it off with an afternoon yogurt and later a dinner at IHOP. I so enjoyed her company and she smiled a lot. We continue to strive for something that looks like a normal life. We have to take it a little at a time.
I wanted to take a minute to thank those people who have helped so much in tangible ways, as well as, those that have been such an outstanding listening support to me. As I thought this weekend about our journey, I realize that all of the support and well wishes have been great but the tangible help and the listening has sustained us. I hesitate to think where we would be now without the help. I know I would never have been able to do it without you. A very sincere thank you.
As we were leaving IHOP, the cashier asked me if Donna (who was still sitting at the table) was my wife. I told her yes and she said that she couldn't help but notice the love. I had to smile. I had no idea it showed.
I'll try to keep the blog going twice a week for those of you who really want to hear of Donna's status. Things get so routine that at times it is hard to ensure I have something meaningful to say. if the note is short, that will be the reason.
Regards
Bob
Wednesday, September 26, 2012
Wednesday September 26
Well we are officially in a new routine. Donna is doing well and is well established in her new routine of rising early, therapy all day and me meeting her at dinner into the evening. We have great visits and she stays very busy. Her improvement is slow but steady. The therapys are about to ramp up in intensity but have been docile so far. Donna eats well so her pre-hard work weight has grown slightly. This makes the therapists and nurses happy as they feel they will take it off soon. Its also good because it satisfies another of the prerequisites for Donna to lose her PEG stomach tube. The only remaining issues is drinking thin liquids. She has been being evaluated over the past week and will start actual trials tomorrow. All great progress.
Donna is also well on her way to being a lefty. With the right hand still slow, the therapists this week stepped up efforts for use of the left. Feeling is that either way its fastest pace to functionality.
There is only one hiccup. Donna has decided that Neuropsychologists wear her patience thin. These are the only sessions that rile her up. Since she is saying what comes to her mind, these folks have been getting both barrels. More patience on her part is helping but personally I can't say I completely disagree with her. She'll get through.
Donna is really comfortable in her room at the facility with new bedding, a softer bed and surrounded by familiar pictures. She likes it but spends so little time in her room that it isn't the biggest of issues. After visiting time at night, she has time to do lots of things and word is she is thumping people at cards before shut eye. I think people there are hoping they'll wear her out in the day so she be off to sleep early.
I went to 1/2 day work days this week and all is well. It seems to be working out fine. With me seeing her only 3-4 hours a day I will be giving some thought to translating the blog to 1 per week. I'll let you know more on Sunday.
Regards
Bob
Sunday, September 23, 2012
Sunday September 23
Its been a week of change, stability and a few exciting bits of normalcy. Donna has settled well in Galveston and we have both become very comfortable with the staff and the help they can provide her. Most of the week has been evaluations in preparation for activity and Donna has appropriately said that she can do more. She will get that chance starting this week. Her days during the week are busy rising early and having nonstop planned activities from 9 to 5 (after breakfast at 8 and then dinner at 5). Its a nice setup as she needs to move between 3 different buildings so she gets outside a good bit. She gets great support and the community is small enough that she is getting to know everyone and a comfort feeling is developing with all.
This past weekend was special. Up until this point, weekend has meant that time when therapists were absent but not much changed for us. Since Donna is no longer in hospital we can do some weekend things. Saturday I picked her up and we spent the day at my apartment in the med center. We cooked, visited, laughed, napped and watched football. It was great and will be part of our plans for a while. Sunday I brought Donna to church in Galveston, we had lunch out with her brother and visited the local yogurt shop as a treat. This may seem simple to you but it was huge for us. We could feel our real lives inching a little closer. We still have a journey but these things reassure us that eventually we will get back to our lives in normal ways.
To give you an update on Donna, her brain continues to heal. Her cognitive function is good and her therapists were very pleased with her abilities during evaluations this week. More to go though but pace is good. She progressed to humor this weekend where she cracked several jokes that sure made me smile. Right now there is a lot of emphasis on the physical side. Mostly right arm and right leg as relates to Donna's ability to use the arm for a lot of things and the leg for walking. Her occupational therapists tell us they drool over a patient that has her arm movement as the potential for major improvement is great. Right now Donna uses her right arm for very little. Muscles are currently weak and motion is limited but it can all be improved. Donna's leg is stronger but the problem is different. One of the muscles is very tight and her walking efforts have created a pressure bruise on her right foot. We'll be talking about options this week. While there could be setbacks to the improvement process, we are optimistic that these physical issues are ultimately repairable. We'll understand the roadmap a little better in the next week or two.
With the great care she is getting and the desire for her to operate more independently, after a few days of familiarity, I started Friday not showing up till the afternoon and leaving at 8 pm (the end of visiting hours). If she does well tomorrow, my plan is to start working 1/2 days as soon as Tuesday. Another step on the normalcy journey. It will be good to see so many people that have supported us so much and hopefully dive into some work. We'll see how it goes. She remains priority 1 but she is doing well.
Regards
Bob
Wednesday, September 19, 2012
Wednesday September 19
Our last two days have been a rollercoaster of change and emotion. They have been difficult on us all but having concluded them I am filled with hope. Let me explain.
Tuesday, our move from TIRR was filled with joy for the progress, enthusiasm for the adventure and apprehension that we could be going into a better or worse situation and not knowing which it would be. The departure went smoothly with Donna having a chance to say all of her goodbye's. The therapists were the hardest because she had struck the most substantial relationships there. Emily, her speech therapist, was the hardest because we had all become very attached with great respect for her, she had also become quite attached to Donna also. I have to say there was some excitement as we loaded into the car and drove away as we embarked on a new adventure, one that screamed of Donna's improvement. I had to giggle 5 miles down the road when Donna asked if we were there yet and kept remarking that this was too far. This from the lady who happily used to go on multi-day road trips and has been to 49 states. We stopped at Olive Garden and Donna feasted on a pasta and italian sausage dish. She did great and enjoyed the adventure. I got some experience bringing her to the public restroom (x3) but all was great. We reloaded into the car and realized we had gobbled up a bunch of time. That was confirmed when the facility in Galveston called as we were coming into town a little worried that maybe we got lost or changed our mind.
Tuesday night was the hard part. The people were nice but as you would expect anywhere, John and I started to have more and more hesitation as the evening came closer to a close. This facility has only one private room for a woman and apparently Donna's reputation with roommates preceded her as she got it. As John and I walked to our cars, it was clear that we were carrying our hearts on our sleeves and reevaluating every decision we have made with a fair bit of apprehension. In the end we stayed firm on the course but my heart was very heavy. This heavy heart got even more contorted later that evening when the staff called me because Donna wanted to talk to me and have me come get her. After a brief chat she was ok but I can't describe the anguish. A long night of restless sleep and prayers followed.
As a testimony to answered prayers, there was sunshine after the dark. Our day today, which introduced us to most of Donna's new therapists, was a pleasure after pleasure. The medical director is highly experienced and clearly quite knowledgable in Donna's specific injury. The facility here is a converted catholic girls school and the old gymnasium is the main physical therapy complex where they have retrofitted it with some cool equipment, most notably a rail and tether system called ZeroG that allows a person to electronically controlled walk across the gym and back with adjustable weight and full support. Looking at it in use today, it seems tailor made to Donna. Her new team is full of young, smart, very nice (mostly lady) therapists. Just the kind of people she responds very well too. Just as I walked away yesterday with apprehension, I came to the end of the day today feeling like God really delivered for us and in amazingly short order. They have a family room here that doesn't get much use during the week. Donna and I sat on the sofa watching TV (just the two of us) and sitting there with my arm around her, just for a few minutes felt like we were transported home.
I know we will still have a bunch of difficult days ahead and Donna still has a lot of very hard work to do, but today we were good and filled up with hope.
Thank you all for your prayers and words of encouragement. They do work and lift us up at difficult times. We continue to meet people with amazing stories of tragedy that make us feel blessed and people supporting them who have unshakeable faith; they help reassure us that in the midst of our challenges we are very blessed. They provide great examples of the power of determination and faith. We strive to follow their example.
Thanks to all,
Bob
Tuesday, our move from TIRR was filled with joy for the progress, enthusiasm for the adventure and apprehension that we could be going into a better or worse situation and not knowing which it would be. The departure went smoothly with Donna having a chance to say all of her goodbye's. The therapists were the hardest because she had struck the most substantial relationships there. Emily, her speech therapist, was the hardest because we had all become very attached with great respect for her, she had also become quite attached to Donna also. I have to say there was some excitement as we loaded into the car and drove away as we embarked on a new adventure, one that screamed of Donna's improvement. I had to giggle 5 miles down the road when Donna asked if we were there yet and kept remarking that this was too far. This from the lady who happily used to go on multi-day road trips and has been to 49 states. We stopped at Olive Garden and Donna feasted on a pasta and italian sausage dish. She did great and enjoyed the adventure. I got some experience bringing her to the public restroom (x3) but all was great. We reloaded into the car and realized we had gobbled up a bunch of time. That was confirmed when the facility in Galveston called as we were coming into town a little worried that maybe we got lost or changed our mind.
Tuesday night was the hard part. The people were nice but as you would expect anywhere, John and I started to have more and more hesitation as the evening came closer to a close. This facility has only one private room for a woman and apparently Donna's reputation with roommates preceded her as she got it. As John and I walked to our cars, it was clear that we were carrying our hearts on our sleeves and reevaluating every decision we have made with a fair bit of apprehension. In the end we stayed firm on the course but my heart was very heavy. This heavy heart got even more contorted later that evening when the staff called me because Donna wanted to talk to me and have me come get her. After a brief chat she was ok but I can't describe the anguish. A long night of restless sleep and prayers followed.
As a testimony to answered prayers, there was sunshine after the dark. Our day today, which introduced us to most of Donna's new therapists, was a pleasure after pleasure. The medical director is highly experienced and clearly quite knowledgable in Donna's specific injury. The facility here is a converted catholic girls school and the old gymnasium is the main physical therapy complex where they have retrofitted it with some cool equipment, most notably a rail and tether system called ZeroG that allows a person to electronically controlled walk across the gym and back with adjustable weight and full support. Looking at it in use today, it seems tailor made to Donna. Her new team is full of young, smart, very nice (mostly lady) therapists. Just the kind of people she responds very well too. Just as I walked away yesterday with apprehension, I came to the end of the day today feeling like God really delivered for us and in amazingly short order. They have a family room here that doesn't get much use during the week. Donna and I sat on the sofa watching TV (just the two of us) and sitting there with my arm around her, just for a few minutes felt like we were transported home.
I know we will still have a bunch of difficult days ahead and Donna still has a lot of very hard work to do, but today we were good and filled up with hope.
Thank you all for your prayers and words of encouragement. They do work and lift us up at difficult times. We continue to meet people with amazing stories of tragedy that make us feel blessed and people supporting them who have unshakeable faith; they help reassure us that in the midst of our challenges we are very blessed. They provide great examples of the power of determination and faith. We strive to follow their example.
Thanks to all,
Bob
Monday, September 17, 2012
Monday September 17
Just a quick update as clarity on our plans arrived today. We are leaving TIRR tomorrow (Tuesday) and headed to Galveston. We are all happy and a bit apprehensive. Happy to be moving on and apprehensive to leave the comfort zone of the hospital and move into a new situation. Overall happy though that we are moving one step closer to home. Donna spent much of the late afternoon telling everyone.
We have a great day planned for tomorrow, saying all of our goodbye's at TIRR. I'll be driving Donna down and John will be along also. We'll stop for lunch wherever Donna wants to eat, possibly swinging by Ellington field where the shuttle will be tomorrow, and then off to our new location. I'll be in Galveston for the next few days seeing Donna settled and will give all an update on Wednesday.
Wish us luck, many prayers and wonderful healing recovery for Donna.
Thanks and onward,
Bob
We have a great day planned for tomorrow, saying all of our goodbye's at TIRR. I'll be driving Donna down and John will be along also. We'll stop for lunch wherever Donna wants to eat, possibly swinging by Ellington field where the shuttle will be tomorrow, and then off to our new location. I'll be in Galveston for the next few days seeing Donna settled and will give all an update on Wednesday.
Wish us luck, many prayers and wonderful healing recovery for Donna.
Thanks and onward,
Bob
Sunday, September 16, 2012
Sunday September 16
Today September 16 is exactly 3 months since the accident. So much to reflect on. It seems like so long ago and some of the early steps seem almost like a dream (a scary one). It is also a good time to look at Donna and realize that despite the slow pace of her improvement, she really has come a long way. I sometimes think, couldn't the medical professionals have told us the details about this journey to better prepare us but then I think we were probably better off not knowing the specifics. It may have been too much to swallow at the time. It does make me wonder about the future though.
This has been a very difficult week, more for me than Donna. Its the result of a combination of Donna's medicine inconsistencies and considerable uncertainty on where Donna will be going when we leave TIRR this week. Both factors culminated in a good bit of worry and stress.
Regarding Donna, changes to her medicine to avoid some undesirable side effects had us gyrating between a girl asleep until well into the afternoon and a very uncomfortable lady. Her sensitivity to medication has the doctors adjusting dosage and and medications. Donna got a lot of sleep, her therapists got a bit frustrated and I just got worried. Truth is I probably shouldn't have worried much as it is the kind of problem that gets worked out, but it seemed like such a bump in the road after such a positive stretch, that it was challenging to handle. After her liveliness of the last few weeks, seeing her too sleepy to do much has a way of generating concern. Some changes had her looking better on Saturday so we will hope and pray the road is steadying out. Today was still a little sleepy.
The decision regarding Donna's next move has had twists and turns. There were primarily 3 options on the table. After much inquiry and deliberation we settled on the best option which shortly after became unavailable at this time. After a good bit more anguish, we mulled over options 2 and 3. A few days of back and forth burned a lot of emotions. The resulting plan has Donna moving to another facility for further therapy. We had hoped for a Houston med center facility but that will have to wait (option 1). Right now the betting money is at a facility in Galveston. It has challenges for us but is the best option for Donna and that trumps all. The process (which by the way isn't complete) was incredibly humbling and hard to know the right answers, too many issues. We will pray much that we are making a good decision and that God's healing hands will rule the day.
Donna is doing fine when her medicine allows her to be awake. This week that was usually late afternoon/evening. It makes for some great visiting time and allowed us to talk with her about some of the next options that we are talking about. As always she asks good questions and gives clear thought through answers. Her feelings echo ours, in that she doesn't see clear cut answers. She trusts us so much and we work hard to deserve that trust. Donna looked pretty together on Saturday when she got her hands on some chocolate chip cookies provided by a friend and proceeded to devour several. I brought her come thickened coffee also which she drank to the bottom like it was the fountain of youth. She has so taught us how to enjoy the simply things in our lives. It really makes me think about how when we go home, we will savor every simple pleasure that we never even thought about before.
If Galveston is the outcome that results this week, much will change in our support of Donna. These facilities focus strongly on independence so while they value the family support, they encourage us to take a step back. The distance will compound the issue and could be a blessing in disguise. I suspect this will be as hard on me as her and that may be a healthy thing. It has been a long journey to here and her recovery will be much longer still. Conserving my energy and allowing others to challenge her more will be important I know. I know I'll be much more relieved when the uncertainty of the situation is resolved. Donna feels it too, so thankfully that will end soon.
Wish I had more to tell you on the funny side but sleepy doesn't generate many anecdotes. She continues to beat our pants at cards. I'll be sure to update you all as the next location solution unfolds. Thanks for all of your love and support.
Bob
This has been a very difficult week, more for me than Donna. Its the result of a combination of Donna's medicine inconsistencies and considerable uncertainty on where Donna will be going when we leave TIRR this week. Both factors culminated in a good bit of worry and stress.
Regarding Donna, changes to her medicine to avoid some undesirable side effects had us gyrating between a girl asleep until well into the afternoon and a very uncomfortable lady. Her sensitivity to medication has the doctors adjusting dosage and and medications. Donna got a lot of sleep, her therapists got a bit frustrated and I just got worried. Truth is I probably shouldn't have worried much as it is the kind of problem that gets worked out, but it seemed like such a bump in the road after such a positive stretch, that it was challenging to handle. After her liveliness of the last few weeks, seeing her too sleepy to do much has a way of generating concern. Some changes had her looking better on Saturday so we will hope and pray the road is steadying out. Today was still a little sleepy.
The decision regarding Donna's next move has had twists and turns. There were primarily 3 options on the table. After much inquiry and deliberation we settled on the best option which shortly after became unavailable at this time. After a good bit more anguish, we mulled over options 2 and 3. A few days of back and forth burned a lot of emotions. The resulting plan has Donna moving to another facility for further therapy. We had hoped for a Houston med center facility but that will have to wait (option 1). Right now the betting money is at a facility in Galveston. It has challenges for us but is the best option for Donna and that trumps all. The process (which by the way isn't complete) was incredibly humbling and hard to know the right answers, too many issues. We will pray much that we are making a good decision and that God's healing hands will rule the day.
Donna is doing fine when her medicine allows her to be awake. This week that was usually late afternoon/evening. It makes for some great visiting time and allowed us to talk with her about some of the next options that we are talking about. As always she asks good questions and gives clear thought through answers. Her feelings echo ours, in that she doesn't see clear cut answers. She trusts us so much and we work hard to deserve that trust. Donna looked pretty together on Saturday when she got her hands on some chocolate chip cookies provided by a friend and proceeded to devour several. I brought her come thickened coffee also which she drank to the bottom like it was the fountain of youth. She has so taught us how to enjoy the simply things in our lives. It really makes me think about how when we go home, we will savor every simple pleasure that we never even thought about before.
If Galveston is the outcome that results this week, much will change in our support of Donna. These facilities focus strongly on independence so while they value the family support, they encourage us to take a step back. The distance will compound the issue and could be a blessing in disguise. I suspect this will be as hard on me as her and that may be a healthy thing. It has been a long journey to here and her recovery will be much longer still. Conserving my energy and allowing others to challenge her more will be important I know. I know I'll be much more relieved when the uncertainty of the situation is resolved. Donna feels it too, so thankfully that will end soon.
Wish I had more to tell you on the funny side but sleepy doesn't generate many anecdotes. She continues to beat our pants at cards. I'll be sure to update you all as the next location solution unfolds. Thanks for all of your love and support.
Bob
Wednesday, September 12, 2012
Wednesday September 12
I gave a pretty good update yesterday so I'll keep this short and sweet. I knew that if I mentioned our hospital change plans for next week with any level of confidence it would jinx them. No surprise uncertainty reentered the scene today and we are now not sure we are going or where. One thing is clear and that is we'll be here this weekend.
Donna had a rough 3rd day today rising way too sleepy as a result of the medicine change issues and managed to recover around 11 am as some of the medicine we wanted to stop because of side effects was restarted. The awake part worked for a few hours before the negatives showed again. After a rough few hours, the doctors and I agreed the medicine had to stop and a new plan formulated. Donna"s Doctor here, Dr Joseph, likes the conservative route and that usually works for me. We cut all sleep medicine tonight and the medicine messing with her head will stay stopped. This approach of minimum medicine is one I like so wish us luck. To ensure a better night sleep for Donna, I am staying with her tonight. Say some prayers for a good night sleep and a girl who is not too sleepy tomorrow. What's really interesting is that no matter how we mess up the medicine balance, Donna usually rebounds in the evening hours and is a joy to be around. This phenomenon gives us confidence this is a medicine problem as most of the medicines have run their course by evening.
Today, Donna's Speech therapist brought all the ingredients for one of Donna's favorite salads and they used their time to make and eat it. This happened in those few good hours around midday and Donna guided her well and then devoured the resulting salad. We agreed it sure tasted like home. This salad had goat cheese and as Donna was combining the ingredients, she made sure to get a good bit of the goat cheese on her fingers. Licking those was shear joy for her. This evening I had a hamburger and french fries and Donna had a merry time, eating some of the fries and dipping them in ketchup. These were great breaks from hospital food fare and give us great confidence that supplied with the right food, Donna once again will not have an appetite problem.
Much of the therapy focus is on making sure we are ready for the possibility of going home. The concept is a bit scary for the both of us. Donna because she realizes what she still can't do and me, as I fully understand the challenges of caring for her and getting her the help she needs. If this materializes soon, we'll be quick to take help. Hopefully all will work well for us in our next steps. More prayers!!
Tomorrow is Donna's new group excursion to the natural history museum. it should be fun for her. I haven't been invited and will use the time to wrap up some other things.
We're managing here as we hurl toward change. It's a bit scary but it is all based on positive Donna progress. We have a ways to go but always appreciate the comments of those that see her infrequently remarking on the change. She enjoys company on the weekends as it breaks up a slow time. Drop me a note if anyone wants to come. We can only take a few but a few are good.
Regards
Bob
Donna had a rough 3rd day today rising way too sleepy as a result of the medicine change issues and managed to recover around 11 am as some of the medicine we wanted to stop because of side effects was restarted. The awake part worked for a few hours before the negatives showed again. After a rough few hours, the doctors and I agreed the medicine had to stop and a new plan formulated. Donna"s Doctor here, Dr Joseph, likes the conservative route and that usually works for me. We cut all sleep medicine tonight and the medicine messing with her head will stay stopped. This approach of minimum medicine is one I like so wish us luck. To ensure a better night sleep for Donna, I am staying with her tonight. Say some prayers for a good night sleep and a girl who is not too sleepy tomorrow. What's really interesting is that no matter how we mess up the medicine balance, Donna usually rebounds in the evening hours and is a joy to be around. This phenomenon gives us confidence this is a medicine problem as most of the medicines have run their course by evening.
Today, Donna's Speech therapist brought all the ingredients for one of Donna's favorite salads and they used their time to make and eat it. This happened in those few good hours around midday and Donna guided her well and then devoured the resulting salad. We agreed it sure tasted like home. This salad had goat cheese and as Donna was combining the ingredients, she made sure to get a good bit of the goat cheese on her fingers. Licking those was shear joy for her. This evening I had a hamburger and french fries and Donna had a merry time, eating some of the fries and dipping them in ketchup. These were great breaks from hospital food fare and give us great confidence that supplied with the right food, Donna once again will not have an appetite problem.
Much of the therapy focus is on making sure we are ready for the possibility of going home. The concept is a bit scary for the both of us. Donna because she realizes what she still can't do and me, as I fully understand the challenges of caring for her and getting her the help she needs. If this materializes soon, we'll be quick to take help. Hopefully all will work well for us in our next steps. More prayers!!
Tomorrow is Donna's new group excursion to the natural history museum. it should be fun for her. I haven't been invited and will use the time to wrap up some other things.
We're managing here as we hurl toward change. It's a bit scary but it is all based on positive Donna progress. We have a ways to go but always appreciate the comments of those that see her infrequently remarking on the change. She enjoys company on the weekends as it breaks up a slow time. Drop me a note if anyone wants to come. We can only take a few but a few are good.
Regards
Bob
Tuesday, September 11, 2012
Tuesday September 11
The plan is still Wednesday/Sunday for the blog but I had a few things to report on so I though I would write any way. We've had a rough few days here as we try to get Donna off a few of her remaining medications. It is all a balance and we somehow managed to throw it out of balance. She spent the last few days as a bit of a walking zombie, asleep on her feet. Hopefully we have it sorted for tomorrow but we'll know when we know.
Our TIRR discharge date was set for tomorrow September 12. We got the word today that the date has been extended to the 18th, next Tuesday. There are issues still at work here so it is hard to know if that date is firm or not. That is no problem for us because the therapy here is good and Donna is well cared for. It looks as though the stars are aligning for her to move to a nearby rehabilitation facility where she will get intensive therapy specialized for brain injury patients. I have learned so much through this process and one of those things is to stop worrying about issues you can't control. The old Bob would be stressed over the uncertainty, the new Bob cares about tomorrow being a good day and trying to enjoy being with Donna wherever we are.
A great example of the Lord sending some good to ward off the difficult came on Monday which was a horrible day for several reasons. Then when I was ready to write it off as a total loss of a day, Donna woke up a bit and decided she wanted to try an improved technique of walking in her wheelchair. Before you knew it she was down the hall, in the elevator and down the long corridor to the front door. A shorter version of this journey took her 20 whiney minutes a week or so ago, compared to her all of 5 minutes on this longer journey with no whines and many smiles. She knew she had really figured something out.
She had a swallow test today was resulted in upgrading in her liquids. She has only one step to go to be able to drink anything. She longs for that cool drink of water and that cup of coffee. Emily her therapist said she did great and it won't be long. Halleluia!!
Donna has been most vocal about the group sessions she has been assigned to. She openly tells us they are boring and begs us not to make her go. She even articulated this feeling quite eloquently at the family conference with her doctors and therapists (which by the way made her the talk of the therapy community). Truth is, we agree with her and the team has been trying to promote her through those ranks as quickly as possible to get her to a challenging level. This week she was assigned their highest group and she finally came back today and told me she enjoyed it. It is a small group of the strongest patients who spend Monday-Wednesday planning an external excursion and thursday do it. The plan this week is the Museum of Natural History.
On a funny note, I was trained yesterday on transferring Donna to a car from her wheelchair. We used my car as it was just out front. Later in the early evening she said she wanted to go outside and then said lets go somewhere. I asked her if she wanted to go down the street to the hospital where this journey started and she said sure. As we started walking down the street, she stopped me and asked me in a puzzled voice where I was taking her. I told her and she said "no, she wanted to go for a ride". Then I realized she was thinking car and we ended up turning around and coming back. This girl wanted to hit the streets! I can't blame her. She figured what was the point of the car transfer training if we weren't goin out on the town. That will have to wait for another day.
We journey on here, good days and bad.
Bob
Our TIRR discharge date was set for tomorrow September 12. We got the word today that the date has been extended to the 18th, next Tuesday. There are issues still at work here so it is hard to know if that date is firm or not. That is no problem for us because the therapy here is good and Donna is well cared for. It looks as though the stars are aligning for her to move to a nearby rehabilitation facility where she will get intensive therapy specialized for brain injury patients. I have learned so much through this process and one of those things is to stop worrying about issues you can't control. The old Bob would be stressed over the uncertainty, the new Bob cares about tomorrow being a good day and trying to enjoy being with Donna wherever we are.
A great example of the Lord sending some good to ward off the difficult came on Monday which was a horrible day for several reasons. Then when I was ready to write it off as a total loss of a day, Donna woke up a bit and decided she wanted to try an improved technique of walking in her wheelchair. Before you knew it she was down the hall, in the elevator and down the long corridor to the front door. A shorter version of this journey took her 20 whiney minutes a week or so ago, compared to her all of 5 minutes on this longer journey with no whines and many smiles. She knew she had really figured something out.
She had a swallow test today was resulted in upgrading in her liquids. She has only one step to go to be able to drink anything. She longs for that cool drink of water and that cup of coffee. Emily her therapist said she did great and it won't be long. Halleluia!!
Donna has been most vocal about the group sessions she has been assigned to. She openly tells us they are boring and begs us not to make her go. She even articulated this feeling quite eloquently at the family conference with her doctors and therapists (which by the way made her the talk of the therapy community). Truth is, we agree with her and the team has been trying to promote her through those ranks as quickly as possible to get her to a challenging level. This week she was assigned their highest group and she finally came back today and told me she enjoyed it. It is a small group of the strongest patients who spend Monday-Wednesday planning an external excursion and thursday do it. The plan this week is the Museum of Natural History.
On a funny note, I was trained yesterday on transferring Donna to a car from her wheelchair. We used my car as it was just out front. Later in the early evening she said she wanted to go outside and then said lets go somewhere. I asked her if she wanted to go down the street to the hospital where this journey started and she said sure. As we started walking down the street, she stopped me and asked me in a puzzled voice where I was taking her. I told her and she said "no, she wanted to go for a ride". Then I realized she was thinking car and we ended up turning around and coming back. This girl wanted to hit the streets! I can't blame her. She figured what was the point of the car transfer training if we weren't goin out on the town. That will have to wait for another day.
We journey on here, good days and bad.
Bob
Sunday, September 9, 2012
Sunday September 9
A very nice Sunday here for Donna. She was in a great mood and we filled the day with training, therapy and some old fashion relaxation. The training was preparation for discharge. It looks like the plan is for us to leave TIRR around mid week this week. The therapy team and staff have been excellent. Since TIRR is a facility that focuses on recovery (means medical stability and rehabilitation combined), Donna has just gotten too healthy for the medical side. The therapy rehab is still needed but it has become time for her to move to that type of situation. The result will either be a a local facility that focuses on significant therapy for brain injury patients focused on getting home and independence (patients stay there) or possibly she comes home and goes to out patient rehab. We won't know the answer till mid week. The consensus of the medical staff is the inpatient facility but the insurance folks who pay the bills haven't spoken yet and probably will hold us in suspense till the last. While very different, both solutions can work for Donna. The demands on me will be quite different between them but I'll figure it out no matter what happens.
Donna truly is a joy to be with. She has needs but she shines through. I have been spending the last 12 weeks praying for and working toward a recovery exclusively. I told Donna this morning, starting today my thoughts are going to be less about a recovery focus and more about a living focus. I want to enjoy her more than worry and that was the theme of the day. It was great to take advantage of the great Houston weather today and just sit outside comfortably and visit. We made some plans for a relaxing time after the therapy and it was such a joy to relax and talk about pleasant things.
Many thanks to all the people who continue to support us and send warm wishes and gifts. All of the support never ceases to amaze and lift us. As the time demands on me mount, I have decided that this blog will transition to a Wednesday/Sunday only submission. I know many tell me how much they appreciate the daily messages but demands will win the day. With all of our change this coming week, there may be a supplemental submission or two this week but we will move to the new plan. Thanks to all
Bob
Donna truly is a joy to be with. She has needs but she shines through. I have been spending the last 12 weeks praying for and working toward a recovery exclusively. I told Donna this morning, starting today my thoughts are going to be less about a recovery focus and more about a living focus. I want to enjoy her more than worry and that was the theme of the day. It was great to take advantage of the great Houston weather today and just sit outside comfortably and visit. We made some plans for a relaxing time after the therapy and it was such a joy to relax and talk about pleasant things.
Many thanks to all the people who continue to support us and send warm wishes and gifts. All of the support never ceases to amaze and lift us. As the time demands on me mount, I have decided that this blog will transition to a Wednesday/Sunday only submission. I know many tell me how much they appreciate the daily messages but demands will win the day. With all of our change this coming week, there may be a supplemental submission or two this week but we will move to the new plan. Thanks to all
Bob
Saturday, September 8, 2012
September 8, 2012 from Sarah
While I've been here, I've been spending most evenings with my mom and putting her to sleep. I think my mom is so cute and sweet at night, so I really love this time. Tonight was our last night, though, as I'll be leaving tomorrow. We spent some time this evening reviewing the progress that she has made during the time that I've been here, and while everything can feel very slow and small when you're here everyday, it's pretty amazing to lay it all out and compare. Here's a short list:
-My mom's right arm is able to stretch out much further, she can lift her right arm up off of the bed much higher, and she is able to open and close her right hand significantly better, as she could barely open it at all 2 weeks ago. It's VERY hard to explain these changes to people who don't see her, and there is still a lot of work to be done on this right arm. A lot. But for 2 weeks, the progress has been great.
- My mom's legs are getting stronger. Probably one of the most significant issues we've faced is her tendency to roll onto her right ankle when she stands. While this is still a very big issue, my mom's ankle is getting better at landing on the ground properly. When I first arrived, I also had to completely hold my mom up for her to stand. It was difficult and exhausting, but now, it often feels like I'm just holding on to her as a back up, should she fall. Today I realized that, without reminding her or making her, my mom chose to lean forward and to try standing up on her own, rather than to pull herself up by holding on to me. We've been working on this in therapy for a little while now, but seeing her use those moves and need us less is soooooo satisfying.
- Along the lines of becoming stronger, my mom is also getting more independent. While we've known for a couple of weeks now that she CAN wheel herself down the hall in her wheelchair, she has refused to do so unless her physical therapist is making her. Today, however, my mom was all of a sudden far more mobile in her chair. She rolled herself all over the room when she decided that she wanted to sit closer to someone, wanted to go to the fan, wanted to meet someone in the hallway, etc. We started talking to her about her freedom to go wherever she wants on the floor, and pointing out to her that she doesn't really need us to take her. It felt like the beginning of a new area of independence for her.
- My mom's appetite is increasing. Two weeks ago, you could count my mom's meals in the small number of bites she would take. Her PEG tube is still necessary for two big reasons - she isn't eating enough yet, and her swallow reflexes have yet to permit drinking thin, clear liquids; however, she is slowly eating more and more food, which is great for the goal of getting rid of the PEG.
- My mom's mind is better. She doesn't feel as "out of it" as she had been for such a significant amount of each day, and although she still has her moments of feeling "antsy," she has greater moments of feeling calm and "normal." When my mom doesn't feel like herself, she is now better able to explain to us how she feels, rather than being at a loss for words. I've mentioned it before, but my mom's memory has improved drastically and she can remember things from days and days ago with great consistency. My mom follows nearly all of our conversations, she articulates herself very well with nearly no struggle to find the correct words, and she is able to beat us in cards with strategy. Finally, she is getting her math back. I know I've said this before too, but tonight, we were talking about a close friend of ours who is struggling in calculus. My mom was saying how sorry she was that she wasn't available to tutor him, so my brother proceeded to try and recall enough calculus to maybe help. My brother asked my mom a few calculus questions, and she began reciting these formulas that no one but my brother knew if she was correct about or not. She was! It was insane. It's really hard to understand how her brain could have gone through what it did, but to still have knowledge like complex calculus so early on in the healing process.
While each day continues to bring its own struggles, I often think about the struggles we have already faced over the past 12 weeks. They've all been different. There have been the struggles of the unknown - not knowing when or if my mom would wake up, worrying that she would contract an infection, wondering what she would be like if she did wake up....the list goes on and on. Currently, I feel like we're facing struggles that are less unknown. We don't know what each day will bring, but we know that the healing isn't stopping, and we know that we're getting my mom back. It's hard work for everyone, especially for her, but we begged and pleaded for 6 weeks to have these hard days. We're so thankful and blessed that we get the chance to work our way back.
-My mom's right arm is able to stretch out much further, she can lift her right arm up off of the bed much higher, and she is able to open and close her right hand significantly better, as she could barely open it at all 2 weeks ago. It's VERY hard to explain these changes to people who don't see her, and there is still a lot of work to be done on this right arm. A lot. But for 2 weeks, the progress has been great.
- My mom's legs are getting stronger. Probably one of the most significant issues we've faced is her tendency to roll onto her right ankle when she stands. While this is still a very big issue, my mom's ankle is getting better at landing on the ground properly. When I first arrived, I also had to completely hold my mom up for her to stand. It was difficult and exhausting, but now, it often feels like I'm just holding on to her as a back up, should she fall. Today I realized that, without reminding her or making her, my mom chose to lean forward and to try standing up on her own, rather than to pull herself up by holding on to me. We've been working on this in therapy for a little while now, but seeing her use those moves and need us less is soooooo satisfying.
- Along the lines of becoming stronger, my mom is also getting more independent. While we've known for a couple of weeks now that she CAN wheel herself down the hall in her wheelchair, she has refused to do so unless her physical therapist is making her. Today, however, my mom was all of a sudden far more mobile in her chair. She rolled herself all over the room when she decided that she wanted to sit closer to someone, wanted to go to the fan, wanted to meet someone in the hallway, etc. We started talking to her about her freedom to go wherever she wants on the floor, and pointing out to her that she doesn't really need us to take her. It felt like the beginning of a new area of independence for her.
- My mom's appetite is increasing. Two weeks ago, you could count my mom's meals in the small number of bites she would take. Her PEG tube is still necessary for two big reasons - she isn't eating enough yet, and her swallow reflexes have yet to permit drinking thin, clear liquids; however, she is slowly eating more and more food, which is great for the goal of getting rid of the PEG.
- My mom's mind is better. She doesn't feel as "out of it" as she had been for such a significant amount of each day, and although she still has her moments of feeling "antsy," she has greater moments of feeling calm and "normal." When my mom doesn't feel like herself, she is now better able to explain to us how she feels, rather than being at a loss for words. I've mentioned it before, but my mom's memory has improved drastically and she can remember things from days and days ago with great consistency. My mom follows nearly all of our conversations, she articulates herself very well with nearly no struggle to find the correct words, and she is able to beat us in cards with strategy. Finally, she is getting her math back. I know I've said this before too, but tonight, we were talking about a close friend of ours who is struggling in calculus. My mom was saying how sorry she was that she wasn't available to tutor him, so my brother proceeded to try and recall enough calculus to maybe help. My brother asked my mom a few calculus questions, and she began reciting these formulas that no one but my brother knew if she was correct about or not. She was! It was insane. It's really hard to understand how her brain could have gone through what it did, but to still have knowledge like complex calculus so early on in the healing process.
While each day continues to bring its own struggles, I often think about the struggles we have already faced over the past 12 weeks. They've all been different. There have been the struggles of the unknown - not knowing when or if my mom would wake up, worrying that she would contract an infection, wondering what she would be like if she did wake up....the list goes on and on. Currently, I feel like we're facing struggles that are less unknown. We don't know what each day will bring, but we know that the healing isn't stopping, and we know that we're getting my mom back. It's hard work for everyone, especially for her, but we begged and pleaded for 6 weeks to have these hard days. We're so thankful and blessed that we get the chance to work our way back.
Friday, September 7, 2012
September 7, 2012 From Sarah
My mom had an early start to a packed full day, and she rocked every single thing. We were constantly telling her how proud of her we were, and it was especially nice to have such a great day following the roughness of yesterday. Eight AM brought on the dreaded treadmill, but she handled it wonderfully - she wasn't exactly smiling, but I don't think I heard a single countdown and there was little to no complaining. My mom explained later to John that she didn't feel like she was really walking on the treadmill because there were so many people helping her. This is true, as therapists assist her with her posture, getting her feet high enough off the ground, and to land her feet on the ground evenly. After we assured her that she was still doing a ton of good and hard work though, she conceded and said, "Yeah I must have been doing something because I was sweating like crazy." The rest of the day brought a long list of achievements. James, her OT, literally used the word "amazing" to describe her work today, and he doesn't use words like that liberally. Even my mom's performance in memory class today was a huge success.
One of our daily battles with my mom is her appetite. I don't think any of us thought we'd see the day that my mom didn't want to eat, and she will be the first to tell you that her appetite was the icing on the cake for my dad when they first met. Lately, however, my mom's appetite has really suffered. We push her hard to eat because we all want to get rid of her PEG - my mom more than anyone. We bribe and push her, and we even run through the list of consequences for continuing to need tube feedings, but sometimes there is little we can do to convince her. Her meals today suffered pretty badly until dinner, when I was finally able to coax her into putting down a good meal. She got a lot of kisses and high fives for that.
As usual, my mom is a bit of a social butterfly around the hospital. She knows all of the nurses and remembers everything about their kids. With all of this interaction, there has been a fair amount of favoritism that's developed. She definitely has her nurses ranked when it comes to her nighttime shower (which occurs every other night), and she makes those preferences very well known....! We've been working on those "foot in mouth" moments and on whispering, but after all of this opinion sharing, my mom was able to sweet talk one of her favorite nurses into giving her a shower tonight (even though it was an off night). She knew she was being spoiled. We've learned a lot about brain injuries just by watching some of the other patients on the floor. In the past few days, we've seen a patient with pretty much the opposite abilities as my mom - this patient is physically very strong and has recently become able to walk unassisted. He is still cognitively very ill, however, and he has no idea what he's doing half the time. It's very scary to see and can be extremely disruptive for everyone around. Therefore, while I find my mom to be extremely cute and pleasant, I don't think it's very difficult for her to rank high with the nurses these days!
My mom's memory improves every single day, and today was no exception. She asked John to tell her about his weekend out-of-state last weekend, and when he began repeating some of his stories to her from Monday, she said, "yeah, you told us that already." It's so cool to see her go from asking us what she did earlier the same day, to being bored with our stories from nearly a week ago. The question of where we will go after TIRR is fast approaching and much discussion has/is continuing to take place. We have had to make many decisions up until this point without my mom, but this is the first big decision that we have been able to get her input on. It's really exciting to see that from her, because her input has always been a huge factor for me. I don't know what I would do without it.
Thursday, September 6, 2012
September 6, 2012 From Sarah
Not a whole lot of noteworthy things to mention today. My mom didn't have her best day, but she was a trooper and totally powered through her busy schedule anyway. During OT, she worked on using her stubborn right arm to push a shopping cart. It's not hard to help her understand and appreciate the value in that task! She was all smiles when we talked about her future shopping days.
We had a family meeting today with each of my mom's therapists, her doctor, and a few others here at TIRR. We see and ask these providers questions all the time, but today it was in a more formal setting with everyone together. My mom asked excellent questions during that meeting and articulated herself very well. When she and I walked out with her speech therapist, Emily carried on and on about how impressed she was with my mom and how proud she was with the way that she was speaking to everyone. Later, my dad and I kind of laughed about it because we see those things from my mom all the time. Her brain still has a lot of healing to do, definitely, but as my mom stated to her doctor the other day, her mental abilities are ahead of her physical abilities. And as we all know with that brain of hers, she'll be impressing them with every step.
We had a family meeting today with each of my mom's therapists, her doctor, and a few others here at TIRR. We see and ask these providers questions all the time, but today it was in a more formal setting with everyone together. My mom asked excellent questions during that meeting and articulated herself very well. When she and I walked out with her speech therapist, Emily carried on and on about how impressed she was with my mom and how proud she was with the way that she was speaking to everyone. Later, my dad and I kind of laughed about it because we see those things from my mom all the time. Her brain still has a lot of healing to do, definitely, but as my mom stated to her doctor the other day, her mental abilities are ahead of her physical abilities. And as we all know with that brain of hers, she'll be impressing them with every step.
Wednesday, September 5, 2012
September 5, 2012 From Sarah
And the pirate jokes continue! My mom still has her patch, but she also had a visit from the eye doctor today. Fortunately, her vision issue is fairly common among brain injury patients. Unfortunately, however, this type of double vision can take a very long time to heal (several months), and if it doesn't heal, it may require surgery. We'll just have to wait and see how it goes. Luckily, my mom sports the patch well.
My mom had an early morning today when, first thing, she was put in a harness and made to walk on the treadmill on and off for an hour. It was spectacular to watch her standing upright, and although she required some help to keep the correct posture and to take big and proper steps, she looked absolutely fantastic. Her physical therapist, Laura, had her walking for 5 minutes at a time, and toward the end of the hour, my mom got very exhausted. She would all of a sudden start a countdown, hoping that the machine would stop when she reached zero. At one point, my mom also misunderstood, and thought that she only had to walk for 2 minutes instead of for 5. After approximately 2 minutes, she started telling us that the clock was messed up and that Laura was a liar. She had us cracking up, but it's still too soon for her to see the humor in it just yet!
We don't say very much about speech therapy, but my mom has it twice every day, and we all love her speech therapist, Emily. Today during speech therapy, I felt like I understood what my mom's high school peers must have thought about her back in the day. Emily brought my mom a whole stack of worksheets, all with pretty complex activities on them, and my mom blew through every single one in less than 20 minutes (speech is supposed to last a full 30 mins). Emily explained that she always tries to keep my mom's chart stocked with plenty of tasks, but that she can't keep up and she had completely run out of work for today. My mom gave Emily the OK to end the session early, but I couldn't help thinking to myself, "what a smarty pants!"
I feel like I say this almost every day, but my mom was very herself today. She asked if we could watch tv or a movie, so we decided to watch tv in the family room down the hall for a change of scenery. We watched a few "Friends" episodes together and we spent a lot of time just talking during the commercials. Again, I know I've said this before, but for a significant part of this afternoon, I felt like it was just me and my mom - the way we were before all of this. John spent a lot of time with us this evening, too, and it's such a joy to interact with each other so casually. It's definitely a long ways off, but I know that the day will come when we can finally say that this nightmare is behind us and that we've come out the other side.
My mom had an early morning today when, first thing, she was put in a harness and made to walk on the treadmill on and off for an hour. It was spectacular to watch her standing upright, and although she required some help to keep the correct posture and to take big and proper steps, she looked absolutely fantastic. Her physical therapist, Laura, had her walking for 5 minutes at a time, and toward the end of the hour, my mom got very exhausted. She would all of a sudden start a countdown, hoping that the machine would stop when she reached zero. At one point, my mom also misunderstood, and thought that she only had to walk for 2 minutes instead of for 5. After approximately 2 minutes, she started telling us that the clock was messed up and that Laura was a liar. She had us cracking up, but it's still too soon for her to see the humor in it just yet!
We don't say very much about speech therapy, but my mom has it twice every day, and we all love her speech therapist, Emily. Today during speech therapy, I felt like I understood what my mom's high school peers must have thought about her back in the day. Emily brought my mom a whole stack of worksheets, all with pretty complex activities on them, and my mom blew through every single one in less than 20 minutes (speech is supposed to last a full 30 mins). Emily explained that she always tries to keep my mom's chart stocked with plenty of tasks, but that she can't keep up and she had completely run out of work for today. My mom gave Emily the OK to end the session early, but I couldn't help thinking to myself, "what a smarty pants!"
I feel like I say this almost every day, but my mom was very herself today. She asked if we could watch tv or a movie, so we decided to watch tv in the family room down the hall for a change of scenery. We watched a few "Friends" episodes together and we spent a lot of time just talking during the commercials. Again, I know I've said this before, but for a significant part of this afternoon, I felt like it was just me and my mom - the way we were before all of this. John spent a lot of time with us this evening, too, and it's such a joy to interact with each other so casually. It's definitely a long ways off, but I know that the day will come when we can finally say that this nightmare is behind us and that we've come out the other side.
Tuesday, September 4, 2012
September 4, 2012 From Sarah
As my dad said a few blogs ago, many patients suffer from post traumatic amnesia after a brain injury, which includes having poor short term memory. We've definitely seen this with my mom, but we are also seeing it slowly improve. One of the most obvious ways we see it is in her awareness of the date...she's been keeping track of time and the date each day. Last night, when John and I were visiting with my mom, she started putting us on the spot and asking us questions that she wanted to know the answers to, but would never normally get away with asking us! We answered her - maybe assuming that she wouldn't remember what we had said the next day. But tonight, when she and I were visiting, she told me that she thinks she embarrassed John with some of her questions. I was like, "Wow, well at least you remember doing that! Normally you wouldn't have even remembered asking us all those things." She smiled a very sneaky and pleased smile.
Something that my mom has been having issues with on and off is her vision. She often holds one of her eyes shut, she will tell us that she is seeing double, and when reaching for something, she will often grab for it in the wrong location. During OT, she was doing many of these things, so her therapist suggested an eye patch until my mom can get a vision consultation tomorrow. The patch draws a lot of attention...AND a lot of pirate jokes. It's cute though, and my mom plays the part. She yelled "Ahoy Matey!" to her physical therapist today when they were meeting. We're hoping to get this eye thing sorted out soon because, although it's apparently very common for patients following a brain injury, she definitely performs better in therapy when she can see well (and who wouldn't). Plus, I don't know how many more pirate jokes I can take ;-)
Something that my mom has been having issues with on and off is her vision. She often holds one of her eyes shut, she will tell us that she is seeing double, and when reaching for something, she will often grab for it in the wrong location. During OT, she was doing many of these things, so her therapist suggested an eye patch until my mom can get a vision consultation tomorrow. The patch draws a lot of attention...AND a lot of pirate jokes. It's cute though, and my mom plays the part. She yelled "Ahoy Matey!" to her physical therapist today when they were meeting. We're hoping to get this eye thing sorted out soon because, although it's apparently very common for patients following a brain injury, she definitely performs better in therapy when she can see well (and who wouldn't). Plus, I don't know how many more pirate jokes I can take ;-)
Monday, September 3, 2012
Monday, September 3 from Sarah
The weekends are a little slow around here, but today my mom had a few therapy sessions to break up the day. Today was the first day of her advanced memory class, and once again, she said it was SO boring. So much for warning her that she may be at the back of the class. We tried to fill the rest of the day with activities, like playing cards (she legitimately beats us a lot of the time), and practicing arm exercises to increase her strength. I also spent a lot of today trying to convince my mom that she is not "going downhill." She repeatedly tells us that she thinks she was doing better before she got to TIRR and that she's gotten worse since being here. We remind her often that before she got to TIRR, she was in a coma, so this is impossible. I also read a few blog posts to her today from when I was here at the beginning of August. For a short while, she can see what we mean when we tell her that she is progressing amazingly.
John came home today and spent the evening visiting with us at the hospital. It was really nice to all be together. A few weeks ago, when my mom would often fixate on math, she would beg my brother (the other math nerd in the family) to give her a math problem. At first, he would. He would ask her simple subtraction questions, but eventually he had to stop and just ignore her requests, because she would get so frustrated with not being able to answer correctly. Tonight, something came up about math and my brother started asking my mom math problems. HARD math problems. I kid you not, some of the questions I had to think long and hard about, and some of them I flat out didn't know the answer to. But my mom started busting out the correct answers! I was in shock. We're talking powers, square roots, square roots of a power...! It was incredible. I can think of a few of my mom's tutoring students who are thinking "oh thank goodness" right now ;-) And SHE thinks she's going downhill....!
The short week ahead is scheduled to be a busy one. Last week, I pointed to this kid who was strapped in a harness and who was walking on a treadmill for the entire hour that my mom was in the gym having physical therapy. I said, "Mom, you see that guy? He's been walking on that thing for an hour. That's going to be you soon - I can't wait!" Well....we found out today that that should be my mom on Wednesday and Friday this week. We're looking forward to it!
John came home today and spent the evening visiting with us at the hospital. It was really nice to all be together. A few weeks ago, when my mom would often fixate on math, she would beg my brother (the other math nerd in the family) to give her a math problem. At first, he would. He would ask her simple subtraction questions, but eventually he had to stop and just ignore her requests, because she would get so frustrated with not being able to answer correctly. Tonight, something came up about math and my brother started asking my mom math problems. HARD math problems. I kid you not, some of the questions I had to think long and hard about, and some of them I flat out didn't know the answer to. But my mom started busting out the correct answers! I was in shock. We're talking powers, square roots, square roots of a power...! It was incredible. I can think of a few of my mom's tutoring students who are thinking "oh thank goodness" right now ;-) And SHE thinks she's going downhill....!
The short week ahead is scheduled to be a busy one. Last week, I pointed to this kid who was strapped in a harness and who was walking on a treadmill for the entire hour that my mom was in the gym having physical therapy. I said, "Mom, you see that guy? He's been walking on that thing for an hour. That's going to be you soon - I can't wait!" Well....we found out today that that should be my mom on Wednesday and Friday this week. We're looking forward to it!
Sunday, September 2, 2012
Sunday, September 2 From Sarah
This morning I got up very early and spent the morning with my mom. Yes, this was my first early morning shift, and Starbucks slowly eased the pain a little. But when my mom woke up, smiled at me, waved at me (with her RIGHT hand! I was so proud) and said "Hi Sissy!" the pain of 7 am was gone! We had the best morning together. After laying with her arm around me for a little while, my mom said, "get me up." I said, "where are we going?" and she said, "I don't know but I'm cold." I suggested that we go outside, and she was down for it. Although my mom often does this, and decides two minutes later that she's ready for air conditioning again, the temp that early in the morning was perfect and we had a lovely visit. Sitting in her wheelchair, she propped her feet up on the bench that I was in, and we just talked. It was amazing. There are changes in my mom every day, but today it felt like a slightly bigger change, and it was nice to feel almost normal for a bit. My mom is very insightful during some of these talks - telling me how bad she feels for some of the people in her group therapy classes and discussing all of our hopes for the future (with her holding up her crossed fingers each time). I noticed during this time that my mom's memory, attentiveness, and ability to think about more complex issues seems significantly improved. All of these things come and go, don't get me wrong, but they are becoming longer and more often.
After our talk, we ate breakfast. My mom's been eating pretty well lately - it's kind of up and down, but who can blame her with hospital food. My grandmother made some Cajun food this weekend and my mom was all about it! She even convinced her speech therapist to let her try eating rice and gravy. This is definitely not on her "soft foods and honey-thick liquids" diet, but my mom is quite the smooth talker. Although she didn't get approval to add rice to her menu, she at least got to have it for the day ;-) Unfortunately, those swallow reflexes are still healing, but we're getting there. I felt pretty horrible the other day when I walked in with a venti (Giant!) vanilla soy latte, and my mom immediately reached out and casually said, "give me a sip." It's funny because it's such a normal thing to come from her - she always wants to taste what you have and she loves coffee as much as I do. I just stood there, staring at the coffee, not knowing what to say as my dad made this face like "oh noooooooo, what did you do to us!?!?" I was trying to decide how to let her down easy when my dad remembered that we have these packets with powder in them to thicken up liquid. Genius! My mom's been addicted ever since. Every time we say, "Donna, would you like to try eating some lunch?" she says, "mmmm, no. But I'll take some coffee...." hahaha I love it. My daily Starbucks stop is officially justified. We use coffee to bribe her into eating more food, and when my dad let her drink coffee from the cup today (rather than spoon feed her the thickened liquid), she closed her eyes and held the cup like it was made of the finest gold. She's so cute.
Lastly, there was no therapy today, but there was a movie being shown in one of the conference rooms - it was "Meet the Parents." I had asked my mom this morning if she thought she'd like to go, which she did. At one point, she woke up from a nap telling us that she didn't want to miss the movie, so did we need to go?! When it was finally time, she and I headed off with a bag of movie snacks that I had picked up for her. One of the biggest issues my mom had when we first got to TIRR was attention span - she couldn't focus on one thing for long at all. I didn't expect her to make it through the entire movie today, but I was interested to see how long she could last and be able to pay attention. My mom hasn't quite mastered whispering yet (although when did she ever really whisper before ;-P) but she and I would talk and laugh together about the movie, and she would reach into the bag of candy as she stared intently at the screen. It was so much fun...something so simple as watching a movie together, yet something that we haven't been able to do in a long while. After about a full hour, she said that she was getting tired (she always falls asleep in movies!), but she wished she wasn't because she wanted to see the end. We ended up leaving the movie early so that she could take a nap, and when she did, I left the hospital to run some errands. Apparently she couldn't sleep because I was no more than 10 minutes down the road when she called me (my dad dialed) and told me to come back so we could go finish the movie. I love her. And I love that she's coming back - however slowly it comes.
After our talk, we ate breakfast. My mom's been eating pretty well lately - it's kind of up and down, but who can blame her with hospital food. My grandmother made some Cajun food this weekend and my mom was all about it! She even convinced her speech therapist to let her try eating rice and gravy. This is definitely not on her "soft foods and honey-thick liquids" diet, but my mom is quite the smooth talker. Although she didn't get approval to add rice to her menu, she at least got to have it for the day ;-) Unfortunately, those swallow reflexes are still healing, but we're getting there. I felt pretty horrible the other day when I walked in with a venti (Giant!) vanilla soy latte, and my mom immediately reached out and casually said, "give me a sip." It's funny because it's such a normal thing to come from her - she always wants to taste what you have and she loves coffee as much as I do. I just stood there, staring at the coffee, not knowing what to say as my dad made this face like "oh noooooooo, what did you do to us!?!?" I was trying to decide how to let her down easy when my dad remembered that we have these packets with powder in them to thicken up liquid. Genius! My mom's been addicted ever since. Every time we say, "Donna, would you like to try eating some lunch?" she says, "mmmm, no. But I'll take some coffee...." hahaha I love it. My daily Starbucks stop is officially justified. We use coffee to bribe her into eating more food, and when my dad let her drink coffee from the cup today (rather than spoon feed her the thickened liquid), she closed her eyes and held the cup like it was made of the finest gold. She's so cute.
Lastly, there was no therapy today, but there was a movie being shown in one of the conference rooms - it was "Meet the Parents." I had asked my mom this morning if she thought she'd like to go, which she did. At one point, she woke up from a nap telling us that she didn't want to miss the movie, so did we need to go?! When it was finally time, she and I headed off with a bag of movie snacks that I had picked up for her. One of the biggest issues my mom had when we first got to TIRR was attention span - she couldn't focus on one thing for long at all. I didn't expect her to make it through the entire movie today, but I was interested to see how long she could last and be able to pay attention. My mom hasn't quite mastered whispering yet (although when did she ever really whisper before ;-P) but she and I would talk and laugh together about the movie, and she would reach into the bag of candy as she stared intently at the screen. It was so much fun...something so simple as watching a movie together, yet something that we haven't been able to do in a long while. After about a full hour, she said that she was getting tired (she always falls asleep in movies!), but she wished she wasn't because she wanted to see the end. We ended up leaving the movie early so that she could take a nap, and when she did, I left the hospital to run some errands. Apparently she couldn't sleep because I was no more than 10 minutes down the road when she called me (my dad dialed) and told me to come back so we could go finish the movie. I love her. And I love that she's coming back - however slowly it comes.
Saturday, September 1, 2012
Saturday September 1
Some exhausting days here. The wear and tear on this old man shows. I have to admit that I considered the blog a potential casualty to that fatigue and time demand but in checking my mail today found so many encouraging and supportive messages that I decided to find the time.
Donna did something special yesterday, after weeks of frustration and impatience, she said that she believe she would be "fine". Don't get me wrong she is still in a hurry and still questions if she will fully regain her old form but she is realizing that we will have a good life together. This really meant a lot to me. We spend so much time trying to convey her improvements but it is hard to not see the current limits if you are her. This realization of the potential to achieve is large.
With the onset of the holiday weekend things get quiet at TIRR. Despite that we had some good new experiences today. Donna"s physical therapist, Laura, has Donna and I doing independent 1 hour exercise sessions in the rehab room. Laura has done a great job of defining the the exercises that will help Donna the most and we began today. It worked well, with Donna really bearing down and getting into it. She sees the benefit and enjoyed very much the slower paced, focused approach. It was good she liked it because it will an every day addition to her busy schedule which this week will have therapy approaching 6 hours/day. What were daily naps are disappearing. This means she is one tired puppy at the end of the day.
Also today her therapists signed her up for an outing, Bowling outside the hospital. It was great for her to get out and do something somewhat real. She spends more time now looking at other patients, most all of whom have far worse problems than she. It worries her because she wonders if she is worse than she is and it motivates her to get busy improving. I work hard to help keep it in perspective for her and she is doing well.
Today I explained to her that she has been in 4 different locations and that she has gotten too healthy for all of them. Also that soon TIRR will be the fourth of those locations and it may come in the next few weeks. She gets it but it buoys her for only a while. That girl needs results and given her challenges I find her to be reasonably patient. Far better than I would be.
Finally, like any important decisions we make in life, there is always a little doubt. Many evenings Donna and I sit together and say prayers. Tonight in her part she thanked God for my love, my commitment to her and my patience. We talked later about if my presence here helps in her healing and she told me a number of reasons why it does. She has a great way of filling my batteries and helping me to feel confident in the decisions made.
We move forward with perseverance, faith and and much love. Many days I believe it is the love that makes it all doable for us both.
Good night to all
Bob
Donna did something special yesterday, after weeks of frustration and impatience, she said that she believe she would be "fine". Don't get me wrong she is still in a hurry and still questions if she will fully regain her old form but she is realizing that we will have a good life together. This really meant a lot to me. We spend so much time trying to convey her improvements but it is hard to not see the current limits if you are her. This realization of the potential to achieve is large.
With the onset of the holiday weekend things get quiet at TIRR. Despite that we had some good new experiences today. Donna"s physical therapist, Laura, has Donna and I doing independent 1 hour exercise sessions in the rehab room. Laura has done a great job of defining the the exercises that will help Donna the most and we began today. It worked well, with Donna really bearing down and getting into it. She sees the benefit and enjoyed very much the slower paced, focused approach. It was good she liked it because it will an every day addition to her busy schedule which this week will have therapy approaching 6 hours/day. What were daily naps are disappearing. This means she is one tired puppy at the end of the day.
Also today her therapists signed her up for an outing, Bowling outside the hospital. It was great for her to get out and do something somewhat real. She spends more time now looking at other patients, most all of whom have far worse problems than she. It worries her because she wonders if she is worse than she is and it motivates her to get busy improving. I work hard to help keep it in perspective for her and she is doing well.
Today I explained to her that she has been in 4 different locations and that she has gotten too healthy for all of them. Also that soon TIRR will be the fourth of those locations and it may come in the next few weeks. She gets it but it buoys her for only a while. That girl needs results and given her challenges I find her to be reasonably patient. Far better than I would be.
Finally, like any important decisions we make in life, there is always a little doubt. Many evenings Donna and I sit together and say prayers. Tonight in her part she thanked God for my love, my commitment to her and my patience. We talked later about if my presence here helps in her healing and she told me a number of reasons why it does. She has a great way of filling my batteries and helping me to feel confident in the decisions made.
We move forward with perseverance, faith and and much love. Many days I believe it is the love that makes it all doable for us both.
Good night to all
Bob
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