Sunday December 16

Well there are weeks when it feels like little or nothing happens in Donna's growth and then there are weeks like this one.  It wasn't physical or a skill being rediscovered, Donna redefined clarity of her mind this week.  Her memory, her verbal engagement and her forward thinking just flew forward where we thought she had already made great strides, and then it was so much better.  I have laughed with her so much this week.  Awesome.  There are still improvement spots and who knows she may redefine it again but even she has had to admit the amazing change.

Other things show that step improvement in awareness also, a couple times this week I spotted her fixing her hair in front of a mirror as we passed.  This awareness of her appearance and a desire to fix it is great to see.  It may even get her out of "guy-prepared" hair.  Clearly a fate worse than death.

The other news of the week is that finally a surreal situation with Donna's shoes has been resolved.  First we had a complete miss-fire of the planned shoes, then we couldn't find any that fit the brace foot,  then style two started to create a red spot on her foot as she walked, then finally victory.  It took ten pairs to get her two shoes that fit well.  Despite hating to shop, I got it done with reasonable patience although I had a moment or two (right mom?). I really respect people who live with that challenge all the time.  Donna's is temporary (we hope).   With the shoes sorted we are off to walking more aggressively both in therapy and at home now.  We brought her walker home to try out and, with some stewardship, Donna walked from the car to her living room chair.  Awesome.  Much more walking to follow when we get home.  Our goal will be to render the wheel chair obsolete.  It will take a while but we'll get there.

As we get close to leaving Galveston, Donna's impact on that community is becoming more clear.  She will be very missed.  In the midst of her own challenge she has charmed everyone there, served maternally to many and demonstrated such grace.  Her roommates mother summarized it best to me when she said that Donna is such a fine person.  That even with her challenges it shines through brightly.  No complaints, hard work, camaraderie and encouragement to others.  It really is amazing to see.  Donna's old roommate (who is now in an apartment at the facility) calls Donna "mom" and invited her for coffee one evening this past week.  The photos show much smiling and fun.

This weekend at home Donna started back to one of her favorite pastimes, reading.  There has been no time for it in Galveston as her days are filled with therapy and fatigue but she really enjoyed herself and so looks forward to the peace and relaxation of reading at home.  I have considered that she is searching for that escape from too much time with Bob, but she assures me not :-)   It also is an indication that she is managing her eye issues well.  We see the eye doctor again in early January, hopefully to have much further improvement confirmed.

Over the last 6 months, we have received so many cards and notes.  Those that came since Donna is able to digest them have all been read to her but even many of them are not remembered due to her previously spotty memory.  Recently she remembers all.  You will be happy to know that all of those cards went into a basket beside her bed and she and I will go through all of them again after we get her home.  I browsed them this past week and there are so many amazing messages.  Thank you.  There was one that Donna and I both felt was worth sharing as it hit home.  I also remember that it came in the month of August which, aside from coma, was the toughest time of Donna's rehabilitation.  I remember well the value of the message to me at the time.  It is shared here:

The Oak Tree

A mighty wind blew night and day.
It stole the oak tree's leaves away,
Then snapped its boughs and pulled its bark
Until the oak was tired and stark.
But still the oak tree held its ground
While other trees fell all around.

The weary wind gave up and spoke,
"How can you still be standing, Oak?"
The oak tree said, "I know that you
can break each branch of mine in two,
Carry every leaf away,
Shake my limbs and make me sway.
But I have roots stretched in the earth,
Growing stronger since my birth.
You'll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn't sure
Of just how much I could endure.
But now I've found, with thanks to you,
I'm stronger than I ever knew."


Our plans with Donna are firm now.  Donna made her last trip back to Galveston tonight.  She'll be home this Wednesday, hopefully followed by a great Christmas at home, starting out-patient therapy on December 31st and living our lives from there.  I will cease work for several months on Wednesday also and I'll do all I can to get Donna well down the road. She and I are both really looking forward to it.

We will take a break from this blog for the next few weeks as we savor the holidays with our family.  The last blog entry will follow the holidays on January 6.   Till then we ready ourselves for all the "last time" activities of the coming week.  We are very blessed and grateful.

Merry Christmas and Happy New Year!!
Enjoy your families and see you on Jan 6.

Regards
Bob

Sunday December 9

As we get closer to the end of Donna's stay in Galveston, time seems to be speeding up.  I'm sure it feels that way to all of you as you try to get all those last minute Christmas chores done.   For us it feels very transitionary.  We're doing all we have been in a typical busy week, while trying to get a good feeling of Christmas going at our house, I'm wrapping up work for a good while,  and we are working to get several situations at the house ready for the lifestyle we are about to step into.  Over the time we have been in Galveston we have watched a large number of people leave to go home.  It has been an interesting set of emotions from them; joy, sadness, apprehension, uncertainty.   Donna and I are starting to see those now.   The joy is easy to understand.  The others I think are rooted in the uncertainty.  We'll be finally moving from a situation where professionals guide the process to a situation where professionals supplement in only a limited way.  Its just what we prayed so hard for but it does have its uncertainty.

Donna continues to improve slowly.  Most notable are her improvements in the walking area.  Now armed with her new brace and a green light to be aggressive, her therapists have been stepping up (literally) her walking more.  Thursday she was supported by the ZeroG machine (10%) and walked on the treadmill 400 feet.  This week her own walker was delivered and she has been walking getting familiar with it.  All of this walking comes very slowly and with assistance.  It also exhausts her but the improvements are easily measurable.  On Friday, I was fortunate to be there when, in the last part of her 2nd physical therapy of the day. they had her walk from the gym to her next session, which happened to be in the next building and upstairs (we use the elevator).  I could tell that none of the therapists were sure she would make it all the way but in classic Donna style, she delivered.

Just a couple quickies on Donna's physical therapists (there are 3 in total and they are all great).  The primary therapist that works with Donna is Jennifer and she is just awesome.  Knowledgable, professional and the sweetest person you will probably ever meet.  Needless to say that she and Donna get on just great.  Jennifer is also expecting a child in January and my big joke with her has been that we are looked at it as a race with that baby for Donna to get better before that baby is born, and we intend to win.  She always laughs and reassures me but I have to say in my mind it really has never been a joke.  The other funny thing is that Donna jokes with them often about the distances she has walked because they always want more tomorrow.  Donna is always happy to go the distance but her joke is that she really doesn't want them to know the truth so she can manage their expectations a little better.  It never works.

Donna's mind is awesome (again).  She regularly provides evidence that it is roaring back and even she has had to acknowledge how well she is doing in that area.  Its a bit like a dam that only needs a little pinhole to breakthrough.  Often she'll ask a tickler question geared toward remembering something and then armed with that small answer she delivers a flood of memory and knowledge.  This is an area that it is so easy to smile and be excited.  I'm sure this surprises none of you.  Also armed with this awareness and her expanding thoughts she has become much more cerebral in her approaches to people and a bit more maternal to some of the other patients.  Pretty regularly she sets straight another patient on acceptable behavior but does it in that friendly, maternal way.  Several times over the last few weeks, therapists have stopped me and had to tell me about the way she protected another or challenged another intellectually.  A couple of the stories are just hilarious and, as usual, the one who tells the story best is Donna.  No surprise again that she is a therapist favorite.

Well Donna and I have often said that we could do anything for 6 months.  We never imagined that something like this would be one of the options.  We come toward 6 months next week and I realize that our staying power is good but all of the lofty expectations that Donna would race back were overly optimistic.  I think the most accurate revelation came in the first few weeks when we realized Donna's recovery would be a marathon and not a sprint.  Despite all of the awesome progress, we are still somewhere mid-race and everything takes longer than we expect.  We have learned patience but there is still that part of us that so doesn't want to be patient.  ( I know what you are thinking, Bob...Patience... no way...Well it is amazing what can be done with even hopeless cases).   It will be very important to keep this all in mind as we go into our next phase.

Lastly as I run into so many of you, I can tell that I take some off guard by often asking about you and how you and yours are doing early in the conversation.   I have to tell you that Donna and I have been talking about us way too much over these last 6 months.  The truth is, we are both pretty hungry to know how everyone else is doing and what is going on in their lives.  Hopefully hearing this from us will make you more comfortable downloading us.

Well,  as we lunge into the last of our time in Galveston.  It will be a week of preparation, finalization and reflection.  Here we go.....

Regards
Bob

Sunday December 2

Well we made it to December, with all of its amazing "Merry" aspects.  Aside from the blessings of the Christmas holiday and the hopes of the New Year, it also marks the long awaited homecoming for Donna and the start of the next phase of our lives.  Donna's departure from Galveston is still scheduled for December 19 and it struck me tonight as I brought her back, that I will bring her back only 2 more times.  Whew..  We talk about it and are both very excited for home.

Donna is doing well.  She had her doctor's appointment with the surgeon who operated on her leg this past week and his assessment is that she looks great.  The leg is healing nicely and the range of motion is just that desired.  His report was glowing and it left us feeling the same way.  His recommendations were to stand on it and walk as much as possible.  Thats where we go next.  Donna now wears a brace which she'll use only till she walks more than sits.  She got new training shoes to get a better fit also.  It was a joy to see her walking better in these shoes late last week and hopefully the next few weeks will bring continuous improvement.  Regardless, she is still at a very early stage of walking and her therapy in this area will continue well into the outpatient phase that will come in 2013.

Otherwise Donna starts her last two full weeks of the extensive therapy regime on Monday and her improvements in speech and her right arm are slow but steady.

This week also marked the end of my stay in the medical center.  I moved home late last week and will be preparing for Donna's arrival soon.  It was a happy but very clear reminder of the journey as I left the apartment.  Lots of memories of TIRR including late night visits to the hospital and many fears came roaring back as I sorted through remnants in the apartment.  The memories seem ages ago but help me recall the journey and amazingly how easily it slips behind us.

Two other things threw me back into past pain this week.  One was when Donna started back with sweaty spells which had plagued her daily during her coma period.  It was interesting that these sweaty spells, which have been absent for several months, seemed new to her now but very familiar to me as we passed a cool towel on her then regularly to try and give her relief.  One of the first words she said to me coming out from coma was in one of these spells when she said "helps so much".  Now the whole topics seems pretty minor :-)  

The other throwback moment came on Saturday morning when circumstances caused us to be in a place where we either had to go well out of our way to avoid the accident location to get home or drive the road where it happened (Donna and I both in the car).  I don't think Donna realized where we were but all of my emotions were in hyperdrive.  In some ways it was good to face the situation but it brought it all racing back...  Glad thats over.

Donna and I continued our baby steps into really living our lives by going out for coffee in Galveston Friday night and catching some street music, as well as,  Donna attending an annual cookie exchange she enjoys very much at a nearby neighbors home.  These were real life fun and were precursors to the plans we have when she gets home to fully live our lives regardless of the stage of Donna's improvement.  Donna and I are both really looking forward to it.

Along those lines of moving on with our lives, this blog dedicated to Donna's recovery also will need to meet an end at some point.  I've decided that the time for that end will be early January 2013 after we get a taste of the new life and see the the outpatient recovery regime we'll move into.  That will give us 4-6 more posts and hopefully an opportunity to share with you how we get ourselves set in what will be our lives.  As it gets closer, I'll share info on how people who want to know how we are doing can contact us.  I know for some this will be a loss of good info but as we shift to a living, and not recovery, mode, it seems like the right time.

Lastly, Donna got a new roommate this week. She's a sweet young lady (only 17) who's parents are extremely nice and in Galveston also as their home is in Arkansas.  Difficult.  I haven't said much about Donna and roommates is quite a while but she has had 3 at TLC and all have been a joy.  She has enjoyed their company and they hers.  As Donna has become the unofficial mom of the the facility, she really makes the experience for all around her so much more pleasant and tolerable.  Some things never change.  Donna's roommate's parents told me tonight that they would like for their daughter to remember her math.  Oh my.... I guess you can see what is coming next.  It looks like the next phase of Donna's recovery may be tutoring.  Some things really don't change.

Hope your preparations for Christmas are happy and joyous.  Ours are.

Regards
Bob

Sunday November 25

Our Thanksgiving week started with two blessings, one very clear and the second disguised.   The clear blessing was our success in bringing Donna home for the Thanksgiving holiday.  We were able to bring her home for the 4 full days and we were thrilled.  The second blessing was the result of me forgetting my phone in Donna's Galveston room when we went to pick her up.  My first reaction when I learned of the problem when arriving home was concern but soon I realized what a blessing to be disconnected for the holiday weekend.

A lot of effort generated a complete Thanksgiving dinner at our house with all of Donna's favorites.  She devoured it all.  It was also awesome to have both Donna's and my parents in attendance.  Seeing Donna sitting in a regular dining room chair at the end of the table was a beautiful sight.  The weekend was such a joy and, as normal, we had enough food to make Thanksgiving dinner keep on giving.  Tonight as Donna polished off a full plate again, she just kept saying how much she loved it.  So many times over the last few months I have hoped that Thanksgiving would maybe be close to the end of this journey.  Now I know that isn't nearly true but it did mark remarkable progress and great joy.

Physically Donna did have her cast removed on the Wednesday before Thanksgiving (don't you just love people who do what they say they will) and she is well on her way to transitioning into her brace that will serve her till she is walking more than sitting, which is when the brace will no longer be necessary.  Otherwise she just works hard with a good attitude and steady slow progress.  This is all we can ask for.

As we start preparing for Donna to be home, we stepped out into some of the activities we'll use to get some therapy in but also have fun.  One of those we did today was gardening.  With no shortage of weeds in Donna's beloved flower beds and a beautiful Houston Sunday, we strolled outside and plopped her into one of our front yard beds for some hand therapy (wait,  I mean gardening....).   Those who have been around us in our last few houses know that you could have showed up on any fair weather day, chances are you would have found Donna in her flower beds just as happy as could be.  Today she and I had great fun until she got tired and it sure seemed great to put another of our pre-injury activities back into the repertoire.

Our countdown to home begins from here.  We can see clearly now to a planned December 19 discharge and the move to home.  Therapy will be at its most intense now and Donna looks like she is ready.  This weekend made it clear that Donna's homecoming will be a great milestone, a lot of work  and a great opportunity to watch her grow materially.   It is all we could ask for.

Thanks for all your support

Bob

PS I'll be looking for some help when we get home starting with a few mornings a week and potentially growing.  Let me know if you have any leads on someone that would be a good fit with Donna.   A caring and dependable person is a higher priority for us than experience.  Thanks and hope you all had a very Happy Thanksgiving.

Sunday November 18

All, a very busy week and weekend here so I'll get to it.

Donna is great.  Her cast was cut for leg measurements on Tuesday and the inspection of her incision revealed that it looked very good.  The cast was replaced and this Wednesday afternoon it should be finished.  woo hoo.  

I talk so much about all of her accomplishments and steer clear of really personal topics so I sometimes worry that her status in this forum comes across a little sugar coated.  I thought I would spend a little time on her challenges to better share the balance of it all.  First her leg and walking.  No,  Donna doesn't yet walk on her own.  With the cast coming off Wednesday, we'll get our first look at her walking which will be assisted and with a walker over short distances.  We are all a bit anxious and apprehensive.  We know balance is still an issue that is improving but isn't quite there yet.  So regardless of the leg capabilities, she is not yet ready to run off.   Also effecting the walking is her right arm strength,  thats right I said Arm.  This is because for her to be independent walking, she has to hold and steer the walker with both hands.  I'll talk more about the arm next.

Donna's right arm has improved materially but keep in mind that is from little use to considerable range and use of all her motor functions.  Strength and coordination is a steady improvement process but still has a way to go.  She can get her right hand to where she wants and can move all the parts, it just may be a bit weak and not as coordinated as she would like.  We remain wildly optimistic regarding the right arm potential.   Donna is just over the last week redeveloping the habit of trying to use it productively.  After 4 plus months of no capability to use it, bad habits get formed.  I really feel this is a time and effort solution but it is amazing how many daily activities are affected by having a limited arm function.  The issue that could be a problem are the tremors Donna has on her left arm and hand.  They are more than nuisance and we are learning more as time goes by.  Prognosis is unknown at this stage.

Regarding her brain, she is great.  This is great news because this is the part we can't fix.  Aside from some residual minor short term memory lapses (she's almost better than me now) she is great between the ears.  Healing continues as she is not quite at her own high standards but all seems well. 

So aside from ongoing hard work, only two new activities went on this week 1) I was gone for several days and Donna had the joy of being surrounded by her kids and 2) I remain engaged in a bit of an insurance battle over Donna being at home over the Thanksgiving holiday.

On the Bob away and Sarah and John in charge topic,  I managed to attend an annual retreat in Louisiana Thursday, Friday Saturday and Sunday.  That's right 4 days.  I only missed seeing Donna 4 days over the last the last 5 months, so 4 days in a week was a big deal for me.  I wasn't at all worried about her because it gave Sarah a chance to see her at work in Galveston and I knew what a blast Donna would have in the company of both her children this weekend.  I expect to see her glowing still when I see her tomorrow.   Timing for me to be away was great as Donna continues to improve, next month will see both her and my situation changing, and the weather was ideal.  Truth is the break did me well.   By all reports, the weekend went well for all.  

On Thanksgiving, I'm not worried as we will do what it takes to make it work, but these are the tribulations that make life difficult.  We are getting help from all the right people so I am quite optimistic.  One way or another we will give thanks at our table at home with Donna.

So as we all sit down for a Thanksgiving of great thanks, I recall many months ago thinking maybe by Thanksgiving we'll have this sorted.  Well no, but we have so much to be thankful for.  Our lives while tossed on their ear, have become amazingly simple and clear and the depth of the blessings we have been showered with could not be clearer either.  I very much hope all of you hold your loved ones tight this holiday, and for the many that have crosses of their own, I hope it brings you peace.  

I have to admit that this blog originated with a desire to simply push information out efficiently.  I so often get comments and cards from people telling me that it has helped them so much themselves and also those that they have shared it with.  That is so great but it still didn't seem to explain the strong connection and feelings that seem to be generated when I run into people, talk to them on the phone or through notes.  This weekend, something was said at my retreat that seemed to be the missing puzzle piece for me.  The Jesuit priest who led the retreat said, " We become part of each others lives by the stories we share."  That was it, the missing piece.  Donna and I feel very honored to have you all as part of our lives and for us to be part of yours.  I think this is a good lesson for all of us (especially those like me who wouldn't probably have shared much in a manly way) that life experiences shared bind and enrich us all.  I have a good friend in Pittsburgh, who I admire greatly, for teaching me the good in sharing during tough times.  

Thanks for all of your prayers and support for the finest lady I know, Happy Thanksgiving

Regards

Bob

Sunday November 11

Hard work is on, Donna is doing great and the pathway to home is now clear.  Wow I've waited a long time to say those last 6 words : pathway to home is now clear.  I'll give you the details but first how Donna is doing.

She works her butt off.   It has now become a bit routine for her to break a sweat in either her physical therapy sessions or occupational therapy.  Anyone who knows her knows how much she likes that normally (not..) but she does it here with a smile and steely eyed focus.  She knows what is at stake.  The therapy regime is just the way we like it hard, exhausting and yielding steady improvement.   This past week a meeting with her therapy team resulting in improved reports in all areas.  Donna's right arm has seen the most improvement with her range improving greatly from where she was when she got here.  She uses that hand and arm regularly now and the change (while slow) is noticeable. 

Her surgically enhanced right leg is not hurting at all and medical staff are coming next Tuesday to cut her cast and measure for her interim brace.  She'll wear the cast (hinged) for another week and it is planned to come off once and for all the day before Thanksgiving.  What you should be thinking is "the day before Thanksgiving?".  I know, I'm skeptical too but you never know.  God willing we'll be eating turkey without a cast.  Donna walks on the cast now and routinely walks around the gym with the assistance of a walker and some staff assistance.  She gets a little better at this all the time.

So what are our long awaited forward plans.........  After much thought, prayer and Donna's hard work, our plans have taken shape.  Donna will be in Galveston into December and our tentative plan is for her to finish there prior to Christmas (target date December 19).   In the interim we will be home on Thanksgiving and giving much thanks.   Donna will get a break over the Christmas holiday at home and then start her outpatient therapy first of the year.  It is also decided that I will stop working December 19 and be home with her for at least a few months to get her well on the path and hopefully to some level of independence.  We have no illusions that there is still a lot left to do but this blessed step of coming home is the one that at times was hard to imagine and now is a major milestone.   June 16, the day of the accident seems a lifetime ago.

I want to give a little more info on two more topics 1) How is Donna feeling and 2) a little about the facility she is at in Galveston (TLC).   Donna has her days when it all gets her down.  Amazingly these have been few but it happens.  She wants to stay positive and is such a believer in the power of prayer and hard work that she knows it is all possible but at time the doubts creep in.   The value of people marking her progress through periodic visits and the encouragement of her support network mean the world to her.  She still takes an interest in the other patients and therapists and we'll both be forever changed by the amazing people and stories.  These help her attitude.  While there is no sense of competitiveness, you can not help but wish you move as fast as the fastest improving patients, your heart pours out for the slowest moving patients but sometimes all helps her realize her own pace of improvement in a situation where it is sometimes hard to see improvement pace.

I have wanted to describe the support culture that exists at TLC Galveston and why it suits Donna.  All they do is brain injury rehabilitation and there are only about 20 patients.  The facility is situated in a prior girls catholic school complex that takes  a full city block in Galveston.  Patients move between 3 buildings that house, a gym, therapy rooms, residential section etc....   Most importantly they take a very personal touch and care a lot.  I recall a recent story that typifies the overall cooperative culture.  One Saturday morning I was sitting with Donna as she finished her breakfast before we headed home, at the next table were two patients, one who had been there for a good while and another in his first week.  Every time the new patient had a need, the other reached over and adjusted his plate, swiveled his plate, or fixed his napkin.  It was such a sincere expression of support by someone who may have been in the role of need only a little time prior.  It summarized for me the personal caring approach that permeates all facets here.  Everyone knows everybody and that makes it feel more supportive.  Even tonight as I dropped Donna off, she was welcomed by so many.  It makes that sad moment when I walk out each night palatable.

So with the timetable we have, all seems like its moving faster.  Donna will still have a good bit to work through even after we head home but progress is a blessing.  

A little while ago Donna and I drove the few blocks to the beach on a beautiful evening with the sun setting. We opened the windows and just listened to the waves with our eyes closed.  A rare moment of peace.  Thought you would enjoy the image below.

Thank you for your prayers and support.  
Bob

Sunday November 4

Donna remains well but exhausted.  A hard week of therapy found her pretty well spent on Friday.  Most weekday evenings we sit in one of the family areas, sit on sofa and visit (makes us feel a little like home).  Friday her head slowly tilted and tilted until it was limp on my shoulder and it was clear that she had expended all she had as she fell asleep.  It is really just what we want, Donna to maximize therapy intensity.  Many ask about her attitude as it is easy to believe it could be challenging after all she has been through. Amazingly it is awesome.  She welcomes the hard work, understands the goals she pursues and realizes the two are directly related.  She does see the improvements she makes and turns those wins into motivation also.  Not so surprising for her.

We're two weeks into the 4 weeks with her cast.  The cast will be off before you know it.  Donna has had no pain and continues to walk on it every day.  Progress.

One of the great difficulties for months has been Donna's lost drivers license.  I've spent hours and hours trying to overcome this lost picture ID as it has been needed for a bunch of important issues.  The drivers license people would not issue a new one unless Donna appeared in person, not something we could pull off.  Well this weekend Donna wore a dress to church.  Boy did she look great.  We had been working our way up to it the last few weeks but a few misfires.  Finally we were ready based on some help from others.  As we were getting ready to go she said "How about jewelry?"  Well it made great sense but it was another issue I had yet to tackle.  After not locating much of her jewelry, I remembered where her jewelry from the day of the accident was stored.  As I looked through the packets of jewelry secured by the hospital security team, Voila',  there was the drivers license MIA for the last 5 months.  Wow could that have saved some trouble but we were very glad to find it.  You would be surprised how much the DL is used for beyond driving.

This week will have us doing some safety adaptations at our house to accommodate Donna when she gets there.  Just one more indication that homecoming time is getting closer.  Based on the excellent work being done in Galveston,  I am now suspecting this homecoming will not be this month but probably December although everything is always subject to change.  We don't plan too far in advance, we just don't have that luxury.

Donna does well and our routine is becoming more and more ingrained.  All good here, God willing.  This blog goes weekly from here on (Sunday's).  That also is a sign of progress as we trend back toward something that will resemble a normal life style.  Thanks for all your support

Bob

Wednesday October 31

Happy Halloween,
Days like today mark the time of the journey.
Donna is well.  She works hard and shows steady progress.  New developments this week include her no longer needing to wear a splint on her right hand at night.  This thrills her as she wore it with an understanding of the help it was providing for her but never really liked it.  It is another item from early days to disappear (this one from early on at TIRR).  She doesn't have to wear it any more because her right hand movement has reached an activity threshold that no longer requires it.

Her leg remains fine and her walking on the cast (with help) improves.  Great to see.  She is now over a week with the cast and it only stays 4 weeks total so time flies in positive ways.  She had some special angels that painted her toes just prior to the surgery and with an open toe on the cast she looks great :-)

Not a lot more to say other than the dog days of therapy continue and her therapy expands to more independence.  Starting today, she needs to seek out the nurse for her medicine and ask for the specifics by name.  She doesn't take much medicine anymore but that gives you a flavor of the independence theme.  One such activity is a new group she started work with this week that goes out on trips into the community and handles things themselves.  This week they went to NASA for a behind the scenes look with an astronaut.  She told me that she explained to him she was an engineer and that she wanted to know if they have good opportunities for chemical engineers in the space program.  He told her yes and I still haven't been able to figure out if she is planning a second career or had someone else in mind.

I continue to meet people of great challenge.  I became aware of one case that was too close to our story this week.  Amazing people who I admire deeply and who in conversation we can lift each other up.  I wish I could do more for them but that time will come.  All these stories refresh our awareness of our blessings and Donna and I so look forward to Thanksgiving, a day that we always appreciate but one in which we will have more to thank for this year than ever before.

With the pace of activity slower, this blog will move to Sundays only starting this Sunday.  Thanks to all for your interest in Donna

Regards
Bob

Sunday October 28

Donna is good.  Her surgically enhanced right leg is doing well.  The pains of the first day after the surgery have steadily dissipated and she keeps walking with assistance on it.  The cast is heavy and will almost surely result in some stronger leg muscles when it finally is removed.  As Donna works through the revised walking mechanics of a foot that actually gets to 90 degrees, we talk about how it will all feel different again is a few short weeks when the cast comes off.  More challenge but progress to a good solution.

Donna's focus issue right now is what we have been calling Ataxia.  Ataxia is an uncontrolled muscle contraction and Donna has been experiencing something like this in her hands.  It makes things like picking up a glass of water and drinking it smoothly very difficult.  Her Doctor in Galveston has taken a close look at her and believes there is a reasonable chance that this isn't Ataxia at all but may be an adverse reaction to some of her medication.  Being a medication minimalist (which I like) he has removed one of the most logical culprits from her rota.  As some of you may remember from a month or so back,  Donna had a pretty delicate balance going with her medication and the last changes resulted in almost a week of lost therapy due to extreme drowsiness.  They stopped the medicine Friday and all good on the drowsy side so far.  We are watching those shakes closely but limited change so far.  We've become a big fan of straws.  For Donna,  they act a bit like a moonpool (only the drillers out there will understand)  absorbing all the movement.  We pray the solution is this simple, we'll know more over the coming weeks.

Well we have begged for increased therapy intensity and our prayers have been answered plus more.  Changes to Donna's schedule have given her more time in the more intense therapies, and exercises that she needs to do multiple times a day add more.  Our outings at doctors appointments over the last 2 weeks have negated some of that intensity time but it will now come in its full glory.  If that wasn't enough, her physical therapist now has her stand in a standing frame ( a device that stands her upright on her weight and holds her there) in at least one of her group sessions a day.  These sessions were some of her less intense physical time, but that all changes now.  This is what we want (Donna agrees) so despite the daily challenge and fatigue we smile.  Donna's day includes 8 hours of therapy a day and Breakfast, lunch and dinner.  When it all wraps up at 6pm she really has had a full day.

On a lighter note, it was awesome today to see Donna in church with her glasses on singing along as she followed the songs.  All I could think of was that this was a sight we could only pray for before.  Church services also had me jumping today.  Many people have asked me "when you bring Donna to the bathroom, which one do you use?"  My standard answer has been the mens room, as guys seem to be less traumatized by seeing Donna wheeled in than ladies tend to be with me walking in with her.  Well today at church I had the rare opportunity (out of need) to go to both the mens and ladies room twice over the course of the time we were there.  Quite the experience but it is amazing how little I seem to be phased by it all and Donna is so wonderfully flexible, she just rolls with the punches.  I just thought that humorous image of us going back and forth would give you all a chuckle.  it did for us.

We have had so many acts of kindness, warm sharing of prayers and uplifting signs of support that I woefully doubt I am capable of responding to them in even the most minor way they justify.  I fear that people may feel they don't make a difference but nothing could be farther from the truth.  I do pledge that when we get some minor semblance of normal life and I get off the road and reduce my sleep locations, I will do my best to let you know how much it is all appreciated.  Thank you

We keep going...
Bob

Wednesday October 24

Donna's surgery went very well on Tuesday am.  The doctor did a great job and it is awesome to see Donna's ankle at an easy 90 degrees in the cast.  It also fills us with hope.  Donna just prior to the surgery asked her surgeon whether doing this surgery would allow her to hike and garden with confidence.  He said,  "He was confident it would" to which Donna said "ok let's do it".  After all we have been through, it was very difficult on all of us to have her asleep under sedation and I can tell you there was no more beautiful sight than seeing those green eyes open afterward and she asking how it went.   After a woosy day,  today she is aware and generally pain free.  With her cast walking shoe on, she was up on the leg today and reacquainting herself to the full leg mechanics of walking with an ankle in a good position.  A few new aches and pains (things are heavy and the movements are now new) but no question that this is what progress looks like.  Also surely the weight of the cast will build a few leg muscles. Some people will come to Galveston and cut it off in approximately 2.5 weeks to measure her for a special custom ankle brace.  Then they will refit the cast with hinges for the last week and a half while the brace is made.  Her surgeon says she need only wear the new brace till she walks more than sits.  Then no more brace at all.  I like the way this guy thinks.

We also got good news on Monday regarding Donna's eyesight.  Despite still having some double vision, the doctors noticed material improvement in her eye muscles over the last 6 weeks.  The amazing brain (especially in Donna's case) recognizes the double images and is filtering out the extra image in her right eye such that she rarely needs her eye patch.  This explains a lot as we kept wondering why she didn't need it more.  They keep telling us it may become more of a problem as the images collide (improvement) as she may not as easily be able to filter out the image any more.  The eye patch ( and the pirate jokes) may return for an encore performance. Ahoy matey

After a few questions I received regarding liquids, I realize I neglected to share that Donna finally got her full release to thin liquids about a week and a half ago.  It's nice. And closes a whole chapter of issues regarding swallow and retraining muscles.  It was a big achievement that I can't believe I neglected to mention.  We celebrated by traveling to a nearby Starbucks and having a couple of frozen coffee's and a chat.  Sweet, literally and figuratively.

So here in Galveston they check weight once a week, primarily to ensure that a patient isn't flying off the scale in one direction or the other.  So today I expected our good eating Donna (who has been enjoying dessert) armed with a new heavy cast to see a bounce up.  Well they told me that she was down several pounds.  I said that had to be false and after a reweigh....she was reading down still.  She was quick to tell me it was all the hard work but personally I'm not buying it.  Despite the flaw suspicions, we celebrated all the good news tonight with a special dessert I picked up from a nearby restaurant.   At least till next weeks measurement.  Fatigue still rules the days for a girl who works hard and then crashes.  She deserves the treat.

Thanks for all the support
Bob

Sunday October 21

Well it's been 4 full months and this is the 100th post to this blog.  Wow....  Donna is great.  She has gotten the hang of this weekend at home thing and fully enjoys it.  Her schedule was a bit loaded this weekend and lately rest is her big issue, so we may need to find her a bit more rest time.  I guess it is hard to be so loved:-)

We have asked for a more rigorous therapy schedule and it has arrived.  Almost every day after dinner now she is very tired and her support team tells me that it is a rare day that she does head straight to bed as I leave her in the evening.  Well for all of that effort she is seeing results.  Her strength is growing, her balance is improving and her right arm is improving materially.  She gave us two beautiful sights the last few days.  One was on Friday when she lifted her right arm to almost shoulder height and held it there (a few weeks ago she may have been able to lift it a few inches) and the second was Saturday when she locked and unlocked her chair brake with only her right hand.  I'm not sure you can understand the significance of this last one,  to do it she had to get her hand there, grasp the brake handle with adequate strength and then hold that grip while exerting adequate shoulder/arm strength.  It was huge and is a large indication of her potential to regain her prior form.  We have waited a long time for this.

This week will start with major therapy disruptions as we have two final doctor appointments Monday followed by her leg surgery on Tuesday am,  then it will be back to regular therapy work for a while.  I think she is ready for the surgery and are hopeful it will remove a big obstacle to a normal walk.

So let me see if i can make all of you parents chuckle.  The last 2 weeks we have made church services by just a few minutes despite rising hours before.  Its just a laundry list of things to do, Donna's stretch exercises, picking her clothes, shower, outfit has an issue move to outfit #2, breakfast, medicine, outfit #3, 10 minutes for me to get ready, load everybody....   Brings back memories of days long gone by.  Like those past days it is all busy but fun but we still have plans to improve the process.  We'll see how it goes.

In all the discussion we have with Donna now, I'm not sure she is really able to fully comprehend the journey we have all been on.  That's right "all" because I learn as I talk to people that so many of you have gone on it with us.  We feel the love.  Some of the conversations are amazing and so many of you face material challenges also.  I only hope we can be there for you as you have for us.

We plow on, we feel the prayers (thank you), and we remain very hopeful.

Regards
Bob

  

Wednesday October 17

Just a quick update here.
After running through the Doctors appointments of the last week and weighing multiple opinions, it is clear now that Donna will have surgery on her right leg to facilitate a normal walk.  The surgery (a short procedure with more pre and post activity than surgery) is set for Tuesday am.  Her surgeon really impressed us and has a great reputation.   The doctor has done this procedure over a thousand times so we feel very good.  I know there are questions about what this is all about so let me explain.  Donna's Achilles tendon is too tight to allow her to bend it to at least 90 degrees and beyond which is really desired for a normal walk.  This is not the direct result of the accident, it is the result of limited motion for a period.  The surgery involves some cuts in her tendon that will allow it to stretch and lengthen.  It will be casted in the stretched position and 4 weeks later the cast will come off.  The beautiful thing is the tendon heals itself and the other good news is that Donna will be able to walk on it with the cast the very next day so she can fully continue her therapy.

As a result of the feedback from her doctors, Donna is up and walking more aggressively (with assistance) in her therapy sessions already.  It is hard with her leg as it is but she is so determined and willing.  She listens to her therapists guidance and she has endeared them all to her (no surprise right).  It is making it all a harder day for Donna but it allows her to justify those desserts that she so enjoys.  The doctors appointments has caused us to miss a bit of therapy and that interruption will continue Monday and Tuesday of next week but should end there for now.

So lets talk about food because you can't really talk about Donna and avoid that subject.  She is a full fledged lefty eater now.  It started really ugly several weeks back.  A lot of work, not a lot of consumption and a lot of spillage. It truly is amazing that it has become a very neat and precise process with almost no spillage.  Just goes to show how motivated she is to get the food in her mouth and what a great learner she is.  Despite the good Lefty news, work on her right arm continues and is helping. She still wants to be a righty.  Slow but definite improvement is good to see.

Keep the prayers going for her please.  It was really special to hear her tell people in Galveston just how much she enjoyed going home last weekend finally and we so look forward to keeping it going.

Thanks to all,
Bob

Sunday October 14

There are just moments when you know you are getting closer to the end of the journey.  One of them was Saturday night as we were sitting in the our living room watching the LSU game and had nowhere to rush off too.  Gosh, we miss our home and how sweet it felt.  Looking at Donna sitting in her regular soft chair, it was possible for a minute to believe that all of this has just been a dream.

The truth is though we still have excitement. Friday as we were arriving from Galveston into Houston for Donna's Doctor appointment my car overheated as we pulled into the Doctor's parking garage.  Truth is I have been thinking about the potential for car trouble considering the usage, miles and the vintage of the Dodge Durango I have been essentially living in these past months (2004 with 142,000 miles).  Considering that I needed to drive Donna back to Galveston that evening, I knew we had a challenge.  After the appointment we hurried to a nearby Firestone where John met us and graciously gave up his car for the journey back.  All has been rectified.  It was good to know that we had a long list of people we could have called.  The idea of being stranded on the side of the road with Donna didn't look too appealing.

Not much to say yet about Donna's doctor appointment as we will see the second opinion on Monday.  More to say after the subsequent discussion.  We do remain optimistic.  One thing I can share though is that the doctor said she needs to get up on those legs and work aggressively now.  He even put it in writing to her therapist.  The easy days are over but we should see much progress.  Yeah!

Despite all of the anticipation and forethought of finally getting the weekend at home, it seems there was just no way to prepare for the joy of waking up in the morning and just seeing Donna there.  Sometimes you just don’t know what you are going to miss the most, and that was it.  Celebrating at our parish with our church community was great too.  Donna seemed to really enjoy it.  All day Sunday she was content just to sit and visit in the living room from her favorite chair.  To hear her talk about it, she had no idea how much she was going to enjoy it either.  Barring the unforeseen, weekends at home are now the standard and we couldn’t be happier.  John and I reminisced with Donna about how at the beginning we could not imagine this day.  I think Donna finds her sleeping time all just a bit hard to fully comprehend.  

This week is all about finalizing the medical plans for her leg and seeing if the therapy in Galveston gets us there.  

All good though.  We smile on.

Bob

Wednesday October 10

Not only is the PEG gone, Donna's amazing body has already healed the penetration.  Wow has God made an amazing thing, the body.  It took us a while on Monday to get it done, we were reacquainted to the process and pace of hospitals.  It was not a memory we wished to relive but all for a very good reason and a good result.  The doctor told us he needed to use a camera to verify the type of PEG installation inside her stomach prior to removal and Donna, most appropriately, took him to task on why they don't already know based on the files.   Poor resident.  He never had a chance.  She was right but we got past it and all went well.  Turned out to be a positive as we got a detailed look at her stomach condition.

The therapy team in Galveston has ratcheted up work with Donna's arm.  She has a long way to go but the potential is great and the people and means are there.  It exhausts Donna, fighting to use that right arm when a perfectly good left arm is sitting right there and is off limits.  She may actually be headed to restrained left arm therapy sessions where there will be no temptation to use the left.  Her commitment, focus and work ethic are no surprise if you know her.

Friday of this week and Monday of next we head to two doctor appointments associated with sorting out her right leg.  These are two doctor opinions on the same issue and we'll be discussing multiple options.  One is surgery and it will be one of a few tough decisions we will have to make.  I'm not too worried about making a good decision as we now have Donna to ask good questions and join in the decision process.  We already know the decisions will be about risk/reward and uncertainty.  These are subjects we understand very well from our jobs and we will hopefully be able to get good info from the doctors to make the right decision.  The good/bad news is that the staff in Galveston have increased her therapy time but these doctors appointments will negate that increase due to our time away.  A short reprieve for Donna as Physical therapy will probably increase in intensity afterward.

Tuesday was a tough day for me as it was the first day since the accident I didn't see Donna (her mother visited instead).  With the passing of a friend at our church yesterday, my heart went out to her husband.  The combined effect of his loss and me not seeing Donna, made it a hard day.  I sure feel lucky that I get to see her today.  All days together are treasured.  We would like to share prayers with our friend John.  Please send a few his way please.

So we go home this weekend for the first time.  We have grand plans of napping in our own bed and getting reacquainted with a place Donna has always loved.  It is hard to not feel blessed.

Regards
Bob