June 1 update final post

Joy has been a long time coming to our family but it finally showed up in May.   Two big events made it joyous.  First the entire family gathered over Mother's Day weekend in Houston, we had so much to celebrate. It was all so awesome because it had become a very rare day when we could all come together and it afforded Donna lots of excited anticipation and great fun.  The second big joy was the announcement of Sarah and Nate's wedding engagement.  For a family starved for good news, this was like a parched man finding a lush oasis in the desert.   It is also a joy that goes on and on which is so sweet.  All the talk and planning give us great excitement and remind us how life is so awesome to live.

Outside these joys, the mechanics of our life at this point are an unsustainable grind.  Donna goes to therapy of some kind every day and finishes every day tired and desiring more accomplishment.  Me working every day compounds the complexity of it all.    Donna's attitude has been unimaginable. Steady and positive most of the time in the face of what would have most of us frustrated on almost a daily basis.  Focus, discipline and strength have always been abilities of hers.  I tell her that this is part of the answer to "why me?".  It doesn't quite cut it as an answer but I know she can do what other people (like me) can't.  An amazing lady!

A general update on Donna's condition:

Eyesight

We go back to the doctor in a week and this is the long awaiting decision appointment of surgery or not.  Donna and I are sure the answer will be surgery as we know material improvement has not happened.  There is real relief in this answer as we know we will get on with it and god-willing her eyesight problems will end soon.

Right arm

With occupational therapy over, Donna's exercise in this area is around activities of daily living at home.  We have pursued a wide range of efforts to further expand her range of arm motion, extension has improved, flexion has not.  Her orthopedic surgeon believes that there may be original accident injury damage in her elbow.  There are rules of thumb for acceptable range, when you come up short of those limits,  bolder actions like surgery may be viable.    Donna's range is on the borderline.  We'll pursue more opinions but our non-surgical options are nearing a conclusion.   Either it will be good enough or we will go for more.  No urgency here so we will ask for a multitude of opinions and exhaust every non-surgical option.   This is not a pressing problem.

Ataxic tremors

These tremors of her arms and legs are one of our biggest obstacles to step change improvement.   More consultation will happen but options are small here.  This a brain healing solvable situation only.  We'll wait and see what God has in store.

Speech

A real success story.  Great therapy and a diligent Donna makes for steady improvement.  Another month or two of therapy will happen but Donna has already passed the test of acceptable clearness with a few key people who struggled to understand her before.  We were not to be denied in this area and it appears to be working out slowly.

Walking and balance

This is the area of improvement most desired and the place with only a slow steady improvement realized, a real patience tester.   Donna's balance clearly gets better although the journey to independent walking is long.  Strength is much improved (many thanks to Susan) but Donna is not yet close to independent walking.  Donna's assisted walking has better technique and endurance so we remain optimistic but brace for a long journey still.   If the ultimate outcome will be defined by effort and commitment, Donna will be a winner.   Unfortunately we suspect the outcome we desire needs a divine contribution also.  Pray for her here.   We prepare for an amazing life in a situation where it doesn't improve but Donna busts her butt for more.  If the saying "God helps those who help themselves" is true, Donna will be a winner.  I have to say that everyday I now watch people walk and run around and I constantly think how we all take that for granted.  Donna would take just a small piece of that and be so grateful.

So what's really new?  Donna shows collateral indications of improvements in many other ways.  She has started to require less sleep (for 10 months she has needed 10-12 hours per night). Now she averages 9 or less, a sign that her body is giving her back her brain and not demanding as much fatigue healing time.  She has also reestablished her assault on sudoku.   With a great iPad app (she has become an iPad fiend) she has moved from "easy", through "medium"," hard", "difficult" to "evil".  "Evil" was summited today so only "diabolical" level remains.  And to think that I feel like a champ if I can do a "medium".  We go into the yard to enjoy the flowers often and Donna gets better at getting around and soon to take on more of an active role in the gardening activities she loves.  Her mind is so good, the other day, as I was about make a dish, she told me to reference the recipe and then proceeded to tell me it was on page 18 of the red cookbook (which it was).   Then before I could read it, she recited it to me from memory.  Amazing, better than me on my best day but then thats how it has always been.

In the midst of all that we still grind through, we talk about the joy of being a team.  We have decided we have two favorite moments of every day, the moment I walk through the door in the late afternoon and we see each other and smile, and the other is just as Donna is about to collapse into bed and we give each other one huge extended hug.   No matter the intensity of the day, these two moments get us to tomorrow with a smile and remind us that the joy of life isn't the destination, it's the journey together. 

The coming months will be supplemented with the happiness of wedding planning, our much anticipated cruise with the whole family and ultimately a life without therapy and no cares in the world because one way or another, life will be what it will be and we will stop worrying about it.  We hope to see you soon.  As we conclude this long journey of communication,  (its been almost a year) you have heard far too many words from Bob, it seems appropriate that the last words would belong to Donna.

From Donna:

Thanks for all of your support including prayers, words of encouragement, phone calls etc..  I appreciate you following my story and especially all of the support.  I have read all of the cards and I'm sorry I have not written back.  Both my handwriting and typwriting lack a bit still but I love hearing from you so thank you very much.  It has been great to see some of you and I hope to see you all.  I love being home, it is awesome and I really enjoy the time with Bob and my kids.  I know I used to take some things for granted but we always tried to appreciate the good things in our lives.  I really treasure them all now.  It does get very hard sometimes but I appreciate more than ever all of the blessings and people in my life.  Again thanks for all of your support and I hope to see you soon.

Love, 
 Donna

PS if you are looking for us and can't find us try us at Colosimeaux@gmail.com

Our Mothers Day Together

May 1 Update

As April showers give way to May flowers, Donna continues to improve.   April saw a number of changes in our situation and her condition, let me fill you in.  Lots of focus this past month on regaining independence and activities of daily life.   Donna has done so great in these areas, with the help of her awesome occupational therapist Stacey, that tomorrow May 2 will be Donna's last day of occupational therapy.  She needs to spend lots of time at home now practicing the process of living like all the rest of us.  This is great news and is a testimony to how fast Donna learned and the quality of her tutelage.  Donna will really miss Stacey, she is priceless.

So before we dive into Donna specifics, this past month Donna saw her rehabilitation physician for her 3 month check up.  Donna is a picture of physical health so the appointment was as you would like, uneventful.  The interesting part of it was when Donna told her that she just wants to get better faster, her Doctor smiled and explained to us that there is a distribution of potential progress that a person with Donna's injury can expect at this 10 month stage.   She told us that Donna's actual progress did not fit that distribution at all, she was beyond it.  This was one of those double edged sword comments that immediately made us feel good but then when you think about disappoints because apparently expectations were lower and Donna's own expectations are not yet satisfied.   The good news is we don't give any of that progress back and it only gets better from here.  Also she is so healthy that we don't go back to her doctor for 5 months.

So specific Donna updates:

Speech
A great story.   Donna's new voice specialist really knows how to help Donna and she is continuously improving.  This is such a joy to us both as it is really important to Donna.   The approach is not complicated but we are using some great technology tools on Donna's iPad to assist as well as some other devices.  The change is noticeable and consistent.   This is all especially sweet as we have worked so hard to find the right help and we have.   All the talking practice she gets now, more and more, is also a big help.

Walking
Still Donna's greatest struggle.  Donna has done some awesome things in the past month but balance is still her issue.  It continues to improve but slowly.  Her great physical therapy in the pool and out is really helping but it takes a lot to rebuild lost core and leg muscle strength and we can't rush the healing pace of the brain.  Darn cause we so would like to have more influence but this is in God's hands.  On the positive side Donna walks better with her walker (with support) and she constantly extends her prior personal bests in most areas.  The highlight for us this month was when after much preparatory discussion we decided last Saturday to go out front to the street and do an endurance walk.  The intent was to walk (with me as her walker) as far as she could safely.   She walked forward and I looked back.   Well we walked and walked and there is no quit in this girl.   The plan was when we stopped I would set her on the curb and retrieve the chair.   After I used my golf pace-off skills to pace off the distance it tallied to 127 Yards (381 feet).   We were really thrilled as this was such a great start and look forward to another attempt in the future.

Donna wants to walk independently so badly and we are so grateful for the help of a knowledgable and driven, good friend in working with her on strength between therapies.  Rarely do you see such a willing participant as Donna.  She knows the prize.  We will be going at this issue even harder in the next few months.  God willing, we will get there as determination and effort abound.

Eyesight
Not much has changed here.  It looks likely that we will see the doctor again the first of June and if no change is seen (what we expect) surgery to fix the double vision will be next.

Attempts at regaining normalcy rule our efforts.  Donna is doing well in all things that don't require independent walking.  She stays at home alone for very short stints, she tries new things daily.   One of the things that are great to see is her reading in bed at night.   She so used to enjoy this and it is great to see her back to it.  We spend more time in the garden (which is back in top shape with some help we solicited).   Donna so enjoys it.

With normalcy has come my return to work this month.  Ms Ruby (Donna's daytime caregiver) makes this possible and it has worked pretty well.   The first week was rough and my appreciation for single working mom's (while always large) has grown by leaps and bounds.   Sleep is hard to come by in large quantity but thank goodness I am old and my needs have been practiced down over these last 10 months.  When asked at the end of the first week how she felt me going back to work was going Donna said "well for me it is probably an 8 or 9 out of 10, for Bob I think it is probably a 3 or 4".  It has gotten much better since, so all good.

May and Mothers Day give us great reasons to celebrate.  John and Sarah will both be here and it will be joyous.   If you want to see Donna beam, just mention the subject.  We have seen the kids in person (facetime is great) very little over these last 3 months so we are all looking forward to the fun.

The other day Donna and I were talking about time as she finished fully reading this blog.  It amazed us both that she has been home for 4.5 months of the 10.5 total journey.   That just seems mind boggling.  Donna so loves being home and we try to do everything to fully live our lives.  After much discussion we decided two out-of-town weddings in May (that we really wanted to attend) were just a little too much for us but I think there won't be much in the future we will say no to.    I told someone in the last few weeks that we have transitioned from a family with extraordinary challenges to one with ordinary challenges.   I talk to so many with challenges of their own and I think we aren't that far anymore from mainstream.   A far cry still from the charmed life we led before all this but while we would love to get back there, realize life is pretty sweet in the mainstream too.

It is with this perspective of mainstream that we have decided that the June 1 update of this blog will be the last.  Sorry but if you want more (and we hope you do) you will have to call or come see us.  or maybe we'll come to you.  Who knows, we may even be able to conjure up something special for that last update.

All good here.  thanks for all the support, love and prayers.

Bob

April 1 Update

With Spring and Easter joy in the air, it seems an opportune time to update everyone on Donna's progress.  Her previous updates of slow and steady progress continue.  Our last month was highlighted by some breaks in the grind taking some time to visit Lafayette and Florida.   These were both great to get Donna away from her hard work routine.  The trip to Lafayette was too short so another in the not too distant future will be forth coming.   It was great to see family in both of these locations and it provided a good opportunity for us to get an update on Donna's progress from people that have seen her a good bit but not for a little while.  These are always the best source of info for us.  The Florida trip involved a airplane flight and we had a chance to experiment with the wheelchair processes of flying and my ability to carry the belongings of two and still move Donna along.  What we learned was that while a new experience for us, it was clearly not a new experience for TSA and the airlines.   They had the process polished.  Actually the Orlando airport, I have to say, was awesome in their accommodations for Donna.  Donna didn't have to go through the metal detector so we'll have to wait a bit longer to know if her metal arm will set it off.    The only negative that resulted from these trips was Donna's first fall.  Not surprisingly it came on some outside concrete walking where her walker caught in a crack.   Fortunately I was able to partially break her fall and she was no worse for the wear other than a skinned elbow.  It did dramatically raise our awareness though to the idea that as she improves, complacency in protection can't be our approach as her growing confidence puts her in more and more potential risk situations.   Donna's elbow has healed but caregiver readiness remains at high levels.   

So here are Donna's update specifics:

Speech

The first 3 speech therapists Donna had since leaving hospital had told us that her speech is good enough and they seemed ready to cease therapy.   We found this answer unacceptable as speech is so important to her and we felt sure more could be done.  Therapist 4 agreed and realized Donna needed a voice specialist.  Enter therapist 5 last week and wow, were we pleased.  This woman really knew the issues, had experience working with patients of this type and was ready to dig in.  Within 30 min Donna had progressed more than the last 3 months combined.   Attending this therapy in the medical center adds additional wrinkles (and days) to Donna's therapy schedule but we are very optimistic about improvement.  woo hoo

Use of Donna's Right Arm

This area just grows and grows.   Habits are changing (slowly) back to being right handed and Donna's occupational therapist tells us she may need only pursue this therapy for about another month and then it will be time to take a break and just work on it, using the strategies they have taught her.  This makes us happy and sad.  Happy that it is great news but sad because Stacey, Donna's occupational therapist, is just awesome.  It is not a coincidence that in her area Donna has come very far very fast.   We are truly blessed to have Stacey as a therapist and will savor every day we still have.   April will be a busy but great month in this area.

Eyesight

I haven't said much about this in a while but it has become apparent in the last month that Donna's double vision is a real barrier to her progress.  Imagine seeing two of everything and then needing to balance, walk and grab things with coordination.  Donna's doctors from the University of Houston Eye Institute are great and they regularly measure progress to verify natural healing or to establish a baseline for intervention.  Natural progress has not really happened to this point.  It still could in the next few months (they tell us) but if it does not, we will be looking at surgery this summer to fix the problem.  Donna's actual vision is excellent.  If she could just get rid of that 2nd Bob who follows her around all day, all would be well.  We don't worry about this much because the solution to the problem is coming, one way or another, and we generally know the timetable for when it ends.  

Walking and Balance

Such a big issue, our biggest desire for improvement and the area that demands our greatest patience.  Donna's balance improvement continues but is slow.  Her walking technique improves and we are working toward no use of her chair at home.  We still have work to do but Donna can generally walk from breakfast to shower at night with her walker.   As I indicated earlier, we need to hover like hawks because while her balance is better, usually once a day or so she will lose it and there is no telling when that will be.  Over the next month we will be trying to work 1/day to none/day.   She still uses a walker and gets some other assistance now and then.   This is the real slow and steady area.  When we leave the house we generally use her chair, so those who may see us out don't get to see much of her progress but it is happening slowly.

All these improvements happen in spurts.  One of our doctors in the beginning told us it would be LONG and it would be two steps forward one step back.  Some days it seems like nothing progresses and other days it just knock our socks off.  Overall, I think his description of the journey to us was spot on.  For all its bumps, we do appreciate being on this journey versus all we have passed and alternatives we have seen.  I talk about our therapists now and then.  Donna and I unfortunately have gotten to know the different between so-so, good and great therapists.  Donna and I agree that right now all four of the therapists working with Donna, we would say are the finest we have seen anywhere.  Physical (Joseph)l, Occupational (Stacey), Aquatic (Brittney) and Speech (Caitlind).   We feel so blest to have them.

So we seek a normal life and it creeps in a little day by day.  This month, with spring busting out in Houston, Donna and I have spent a fair bit of time in garden centers, with flowers and planting in our yard.   She loves it so much and it is great to see her enjoy it even if her direct effort right now is limited.  The other day normalcy struck me when Donna said she wanted to sit in bed and read in the evening before bed.  I sat with her and read also.  This is so us, and it felt so great.  With normalcy comes the subject of work.  It looms on the near horizon and we are blessed to have a good caregiver in Ms Ruby identified.   Things will be transitionary for a while and we'll need to see how Donna progresses, we can't stand a let up in momentum.

Lastly, Donna has begun the process of reading this blog.  She is in July 2012 and all she reads is news to her. Reviewing it again is painful and reminds me of the immense gratitude we have to so many who carried us on their shoulders and prayed their hearts out for Donna.  Thank You so much

A couple photos.   Donna on Easter and her pushing a cart full of weights with Joseph in therapy ( and i'm sure dreaming of bargain shopping) 

Have a great month!

Bob

PS  Donna has progressed from non-participant, to listener, to now editor of this blog.  another sign of progress!

March 1 Donna Update

February has been a month of perseverance, challenge and hard work, both for Donna and myself.  Donna's progress continues slow and steady.  Donna's challenges this month have involved a progressively more rigorous therapy program, the loss of one of her brothers, and an improvement pace that doesn't meet her desired pace.  My challenges involved a sore back, stomach flu and an ever more complex support plan.  The month started tough but the good news is that it has improved steadily and we find ourselves in pretty good shape now.   Let me fill you in on Donna's progress in her key areas.

Speech

Donna's speech gets better steadily.  Her therapy has been a bit spotty this month with therapists not really knowing how best to help.  We should have this better sorted in the coming month but Donna deserves all the credit for improvements she has seen as a result of practice and healing.  As you may know, getting this right for Donna is important and we will persevere.  

Use of Donna's Right Arm

Both of Donna's sides are getting much stronger.  The exercises do a great job and her occupational therapist, Stacey, is just awesome.  Donna would walk on water for her and she is so full of helpful information and activity.  The right side effort this month has progressed from a focus on gross motor movements to now fine motor skills.  Donna can't do all she desires but her right side keeps improving.  This month she has started eating certain foods with her right hand and more is to come.  She is close to working her way back from temporarily left handed to neutral.  I suspect it may then be back to right handed.  This is all exercise and informed therapy.  All is moving forward great here.

Walking

This is our major focus and Donna's greatest residual challenge.  Despite great strides she remains unsatisfied and there is much more yet to come.  Balance.... Its a lot to do with Balance.  So much therapy has gone into balance improvements and it has improved but essentially Donna needs to learn it all over again, imagine the frustration.  Donna started Aquatic physical therapy 2 weeks ago to complement her existing physical therapy.  It is great.  Her therapist is excellent and facility is super.  After a lot of preparation, this past month has been about much more standing and walking.  Several weeks back, Donna announced on our way into church that she wanted to sit in the pew (as opposed to her chair) and that she wanted to stand.  Little did I know that she planned to stand throughout the entire mass at the appropriate times.  There were many wide eyed people around us.  She has sustained this practice since then which now includes Stations of the Cross on Friday nights.  This past week, after weeks of mental and physical preparation, we finally agreed to put the wheelchair away during the day while we were home.  The last 4 days Donna has walked with the help of a walker only from breakfast to bedtime.  We use the chair when we are out of the house but this is a great achievement for her.  Her endurance is growing, her walking form gets better and her balance improves too.  She has transformed from losing balance 2-3 times in a short walk to losing balance once every 3-4 walks.  I take my hands off regularly now and she keeps on going.  A ways to go here as the progression will be from walker independently, to cane, to nothing (God willing) and the timing is undefined.  Donna works hard though, each day it is hard to see a change but over time it happens. The fatigue she fights is big, but her fight is bigger.

A lot of Donna's improvements have to do with improvements in her core strength. It has transformed from very weak to pretty solid and the difference is so clear in all the movements she makes.  There is farther to go but a solid foundation exists now as a result of the all the exercise she has endured in the last several months.

Our lives have been very full.  Add to my list of responsibilities, Social Coordinator.  I relish the job as Donna so needs and benefits from the breaks and company.  We stay busy. This month we celebrated our 29th anniversary and it was very simple, dinner at our favorite restaurant.  We went very early and had the entire restaurant to ourselves, priceless.  It is all a tricky thing because we want everything on our plate but occasionally the limitations we have to accommodate remind Donna that this journey is not nearly complete.  Her mind is amazingly active and her participation in our discussions and decision making is full.  Often she'll be sitting quietly and come up with the most amazing questions that leave no doubt how active that brain is,  No surprise there.  As would be the case with anyone who has faced her challenges, the most difficult questions always include the word, Why?  It is especially difficult since answers to Why? are so hard to come by.  

We have received the most amazing notes from so many different sources, close and distant friends, as well as, complete strangers who have been pointed to our story with great hardship in their lives and our story gives them a possible window into the future.  These notes are all touching and inspiring.  They remind us of the distance we have traveled and at times remind me of the great fear that once dominated our lives, a feeling  I would be happy to forget.

Our search for the right Caregiver appears to be complete and as soon as Donna reaches a few key milestones that I want to ensure occur, I will probably get back to work.  I am expecting that to potentially happen at the end of March.  Donna likes having me here but even with that desire, too much togetherness can be too much.  Adding the wrinkle of me working will make things harder again over the short term but ultimately drive much more normalcy into our lives.

We had a feeling that by March a rest would be in order and we have plans to relax with trips to both Lafayette and Florida this month.  Grand plans also for late this summer when we will take a cruise.  After all these months of grind, it provides us a great relaxation to look forward to.

I'll leave you with a final thought.  Donna and I for many years have loved Stations of the Cross and especially the version that several of our parishes, including our current church, use. All these years some of the words spoke powerfully to us but in the last 3 weeks as we have heard those familiar words, it in someways feels like we have been preparing for our current journey all our lives.  There are several I could point to but I'll leave you with just one. 

Accept each moment as it comes to you,

with faith and trust

that all that happens has my mark on it.

A simple fiat, this is all it takes;

a breathing in your heart,

"I will it, Lord."

Thanks to all of you for your great support, we love you.  Call or come by, or we can come out as we try to do it all.

Bob

Friday February 1 Donna Update

January has been a great month at home for Donna and I.  We are well established in our routine and Donna tells me I have earned the title of "slave driver".  I do push but I do it just as my beloved Grandma Shahady used to push drinks and sweets on all her visitors, with great love and persistence.  It is fun to hear people ask Donna if she is happy to be home.  Her answer is always clear and quick.  She LOVES it!!! and who could blame her after all she has been through.

Donna's focus for the last month has been on improving 3 primary things, her speech, her right arm usage and her walking.  We quickly got sorted out to be at therapy near the house early this month and have some exceptional therapists.  So let me update you on these three main areas.

Speech
Donna wants to talk naturally (we don't use the word "normal" as it invokes a lecture from our speech therapists).  Much of this month has been spent focusing on improved articulation and while Donna doesn't really like the provided strategies (slower with syllable emphasis), it has helped.  With the exception of a few consonant strings, her speech is now becoming very comprehensible by all.  The next steps we are working on are to impact her prosody (breathing, rate/rhythm, stress and intonation).  For an analytic person like Donna the improvement methods are way too imprecise and require considerable patience.  She works hard and we talk a lot to get in lots of practice (Hard to imagine Donna practicing talking right?).

Use of her right arm
Donna's big shift from righty to lefty was hard as she was initially recovering.  Tremors on her left side and considerable improvement on her right side now, have even Donna confident that her right hand will play a dominant future role and she may very well become righty all over again.  She'll be able to smack me with both arms equally efficiently.  The right arm improvement has been slow but steady and exercises from her therapist (combined with the actual therapy) have made quite a difference.  Compared to where she started, it is nothing short of miraculous.  She dreads the exercises but knows it really is amazing.  Every day she uses the right for more things (habits change slow).  On John's birthday recently, I handed her a pen to try and write something simple and she decided to do it righty.  I was skeptical as this hadn't been tried but she proceeded to write the most awesome cursive "Love Mom".  God is great and miracles do happen.   We have a long way to go before we call the right arm "fully functional" but optimism abounds and patience is the name of the game.

Walking
Walking has been very hard and a bit elusive but it will probably be the key to the most significant change in Donna's abilities and independence.  Donna faces two big challenges here;  balance and exhaustion.  The exhaustion just comes from muscles that have gotten too little work for too long.  This issue is very fixable but it starts with slow and steady exercise and the pace is slow.  Core muscles essentially have to restrengthen a long way.  It has been exciting as Donna's hard work has been paying off.  We are seeing the signs of improved strength but she gets tired quickly and this can often call an abrupt end to a short walking session.   Balance is the really hard issue.  We know from scans that the area of the brain that controls balance was one of Donna's impacted areas and she has struggled to regain it.  After a very focused effort this month, we are starting to see some real balance improvements.  These still have a long way to go but we are optimistic.  Lots of slave-driving going on in the walking area as I challenge Donna to put the wheelchair away whenever we are home but the fatigue can be very limiting.  Donna is a great sport (far more than anyone can expect) and works hard.   Currently she walks with a walker with assistance to support her balance.   This will be an important ongoing work area and we hope to report more progress.

I've been away from work all month and the hard work of home and caring keeps me extraordinarily busy.  I feel I am making a difference for Donna and I'll stay till I feel that isn't so or we find help that keeps it at that pace.  Everything takes a backseat to Donna's recovery.  Being there everyday, I'm lucky to see the small improvements.  It is great to be able to explain what I see to Donna and help her see the differences.

Donna has meticulously read every card and letter sent over the last 7 months.  As therapy (that slavedriver again) she opened, removed the card and replaced everyone.  This took almost 2 weeks in her limited rest (:-)) time.  After about 3-4 days, I started to ask her what she thought and she said it was unbelievable.  Finally she understands the outpouring of everyone's love.  She thanks you all.

Onward into February, more hard work and more of our routine.  We are told Donna's therapy will start to include an aquatic component.  Should be fun.  I'll post an update first of March for those too far away to see for yourself.

Come visit, we are fully living our lives and visits help us break from routine and give Donna feedback on her progress.  I've also included a few of my favorite pictures from this month.

Donna one Sunday after Church.  No brace, two normal shoes.  Leaning for balance but sweet to see

Leaning and only did part but awesome, good food coming

Email typing.  She gets email, but types very slow for replies

Sunday January 6, Last Blog Post

Throughout our lives there are those Christmas's that will always be magically special.  This was one for us.  I guess it was having Donna there and achieving some semblance of "normal" just seemed incomprehensible such a short time ago.  Let me tell you a bit about how we got there and where we have been since.

Donna's departure from Galveston was quick and joyous on December 19.  Lots of thanks and goodbye's but it was easy to see that all those professionals there needed to get on with their new challenges and so did we.  The day we left Galveston, we needed to stop back at TIRR for a doctor appointment with our new (reacquainted) doctor.  I dropped Donna at the outpatient door near the therapy room as I parked the car and as I turned to head for the car I could her one of the therapists calling"Hey Donna!".  While not a family anyone is clamoring to join, the TIRR family is a special group of people.  By the time I got back to her, Donna had visited with several "family" members and over lunch we ran into James (Donna's OT therapist who really challenged her) who sat down and joined us for a while.  All joyous moments filled with Donna showing off abilities James had only hopes for when we were there.  News spread quickly that Donna was there and before you knew it, doctors and therapists were showing up to say hi.  You can imagine how special for these people who care for people at their most challenged moments to finally see an outcome (albeit incomplete).  The reunions were fun and stories were swapped.   The only bizarre thing was that Donna was only a limited participant because her memories only contained small spots from those TIRR days.  They were quickly filled in and the familiarity and love was apparent.

And then we were home....aaaaaah!!  Yes it really was that sweet, for Donna and for me too.  The first days were filled with Christmas anticipation, last minute errands and lots of just staring at Donna and smiling.   Just before Christmas, we got our hands on Sarah, John and Nate and headed out of town to Lafayette to spend a little time with Donna's family.  It was great to see her in that setting doing such "normal" things.  Many had not seen her in a good while and her new skill, "the standing two armed hug", was unleashed in full force.  Be sure to get one of these if you see her.

Christmas for us was just what we could have dreamed; quiet and home.  Mass on Christmas Eve was special and our Christmas Day was the Colosimo standard, pajama's, fun and relaxing.  There were so many great moments to savor Donna's presence and we squeezed in a little exercise with a large dose of relaxation.   We so appreciated those well wishes received for our homecoming and holiday.

We soaked up the joy till December 31 when instead of our normal journey to Lafayette for the new year,  we spent the day completing Donna's out patient assessment in the Houston medical center (TIRR outpatient).  It was actually better than it sounds as Donna took the opportunity to show off a bit with her expanded cognitive abilities.  They are very strong and she easily demonstrated no need to stay in the medical center for outpatient therapy to get that help, paving the way to get outpatient therapy at the new TIRR facility near our house.  We're still working out the details there so we'll be in the medical center this week and, with luck, sorted out near the house the following week.

The last few weeks of being at home have shown us a glimpse of our new and exciting lives.  Donna's mobility and abilities to interact in the home environment grow slowly but steadily.  Our roles have fully reversed, I'm the busy home mom and Donna sits and relaxes a good bit.  This is such a revelation as I expect those roles will only trend toward the middle and never go back to where they were.  My eyes have been opened.  I have too much appreciation now for her and her efforts.  (hint to you guys out there).  I am also an apprentice at all things female.  I never wanted that knowledge but hey, we do what we need to do right? 

Donna still has a way to go but small improvements add up and her attitude and desire to get better are both strong. It is clear that this journey, that we now just call life, will go on for quite some time and patience, hard work and much love will be a big part of it.  We try hard to do normal things ranging from games where she still kicks my butt, to lunch out with friends (which we enjoyed this week),  to a simple visit with a good friend in her living room this past week.  I just smile watching Donna in all these settings and I pray that I will never tire of the amazement of seeing Donna live her life.  We seek to live it to the fullest now so no activity is off limits as long as it can work around therapy.

So this blog in its current form comes to an end now.   The blog itself has been so much more than ever expected; a journal of our journey, a communication to those friends distant and loved, a therapy for me, a read someday for Donna.  The website we use keeps statistics.  The blog (with its now 111 entries) has received over 81,000 page views from 10 countries.  So many wonderful family and friends.  Donna and I have talked about how rarely in life people get to know how deeply they are loved and that Donna has had that blessing bestowed on her here on earth.  Just one of many blessings we've experienced through this ordeal.

From here we'll use this space for a once per month update on Donna's physical improvements for all of you that are distant and can't see her in person.  It won't really be a blog as we'll keep it focused on her progress and keep it short.  I'll try to post it around the first of the month. For the rest of you, come and see her.  She is experimenting with email but it will be a while before you can expect a timely response.  Its still a lot of work for her.  If you don't have our contact info, drop a note to colosimeaux@gmail.com and I'll get you the appropriate contact info.

I leave you with a few photos to enjoy.  
Thanks so much for all of your wonderful support and we look forward to seeing you all in person.  We love company and hearing from you.  Drop us a note, call, or come by.  All are welcome.  

Deepest regards
Bob and Donna

Thanksgiving Joy:

Our Christmas Gang:

Christmas in Lafayette: John, Sarah and Donna

Donna at the Eye Doctor this week.  We had to get a photo at the pediatric giraffe

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