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Wednesday, February 1, 2012

Long overdue update and Happy 40th Birthday Sean!

Wednesday, February 1, 2012

Update #76 February 1, 2012

Today Sean turns 40, he can't quite believe it either. We went looking for birthday cards for Paulette and I kept showing him the "funny" cards for people turning 40, a lot of the time he laughed, other times he just looked at me as if to say "nice Mom".
I took this photo a couple of weeks ago when he had his hair cut. Glad we are able to have this day.
He will be evaluated on Friday the 3rd at the VA in Denver to see if he is ready to take some on line college classes. He wants to try and we just want to know the best direction for him to take to feel successful. VA has many programs for him where they will pay for his schooling we just need to find one that works for him.
Sean saw his doctor yesterday and they are comparing ultrasounds of his leg from 09' and last week to see if the blood clot they found is old or new. His leg still looks awful but it doesn't hurt like it did. It will take awhile for his body to absorb all of the bruising. Thank you for your continued prayers, support and caring for him it makes all the difference.

Monday, January 23, 2012

#75 Update January 23rd, 2012

Spent 6 1/2 hours in the ER today. Sean was complaining that his upper left leg was hurting when he stood up or sat down and going up and down stairs. He had some bruising on the inside of his leg and behind his left knee yesterday. Bruising is easier to come by when you are injured and take warfarin(coumadin-blood thinner)which he has to prevent more blood clots. Today the purple bruising was covering the entire inside of his leg and behind his knee. I called to get an appointment with his regular doctor and they told me to take him to the ER. After all is said and done the doctor thinks he tore a muscle that is bleeding out. They noted a blood clot which could be new or an older one behind his knee going up his upper leg. Since the original ultrasound verifying blood clots still remained in the left leg was done in the doctor's office they couldn't compare that to today's ultrasound so they don't know if he has a new blood clot or not. Probably the biggest thing was the confirmation in writing that he has DVT (deep vein thrombosis)in that leg NOT varicose veins like he was told before he got out of the Air Force. His breathing is more shallow than they like so we need to watch his leg and make sure he does his oxygen at night. Scary but productive and we are home.

Saturday, January 7, 2012

Update #74 January 7th, 2012

The photograph on the top was taken for our Christmas letter. The one on the bottom was taken this summer at a graduation party. He is still our gentle giant. He still has that deep burly voice but he speaks slowly and softly. He doesn't realize how softly he is talking until you tell him to speak up.
It has been almost 3 years since this journey began. Probably the hardest part has been accepting the fact that this is a marathon not a sprint. When they told us they didn't know how much of our original Sean we would get back but that he would be different. He continues to develop almost daily. Sean and I joined Villa Sport Center today to get him swimming and actively exercising again. He has come such a long way. He tested for driving through the VA driver training center. He needs more strength in his hands and feet. He is able to feed himself but not able to write or draw very much. I am looking forward to his being able to write his name and draw again. The cognitive ability to drive is not ready either, time will tell if that will develop more in order for his dream of driving a Hummer again. At this point he looks everyday on line for Red Hummers. It is amazing what he can do on the computer and what he remembers. He enjoys talking to old friends and misses socialization.

Wednesday, June 8, 2011

#73, June 8, 2011

One disadvantage of Sean's living in the house with us is that we sometimes don't notice that he's making progress until someone else brings it to our attention. Since January Sean has been spending more and more time on the computer. First he was only playing computer games. Then he remembered that he had e-mail accounts and began going on-line. He now is looking for Hummers - specifically red ones, like the H3 he used to have. We have received phone calls from Ohio and Washington state from dealers and sellers in reply to inquiries that Sean has put out. When we explain Sean's situation, almost all of the time people are very understanding. One private seller was not very gracious, but that's life.
He has been to Denver's Veterans' Hospital twice for routine visits, and goes to the local VA center for blood work. Tomorrow we'll talk to a counselor to find out whether he should have a higher disability rating from the military, since the clots happened so soon after he and the Air Force parted ways. Thanks to all of your prayers and good wishes about Sean. We really appreciate them, more than you can imagine.

Sunday, January 16, 2011

Update #72, January 15, 2011 - Has it really been 2 years???

saturday, january 15, 2011

Update #72, January 15,2011

It has been 2 years today that both Sean's and our world changed. It has been such a blessing to have a 2 year anniversary on the road to recovery. He still is improving everyday, little steps here and there that continue to amaze us. Thursday he was looking at the mailbox we had given him as a teenager to put his treasures in and lock up for safe keeping. We had to pop out the glass with the mailbox number on it in order to get the extra set of keys for his Hummer H3 that we turned in at the end of his lease. He stated matter of factly "Go for broke" (the combo lock is the old fashioned letters instead of numbers). I said, "What?", and he repeated "go for broke". I told him where were you 18 months ago when we needed to open it. We both laughed. Sure enough I got it open. :o)

We waited to send out our Christmas letters because Sean was evaluated by the VA Brain Injury Team on the 20Th of December and we wanted to include the results in the Christmas letter. A delay in receiving the report in a timely manner resulted in not being able to pass along the results. They still tell us he still can continue to improve. They don't know how much or how long he will take to improve. He has already surpassed several doctor's expectation, which is encouraging. They see his challenges as: memory, fatigue, occasional irritablity, easily distracted, residuals of cognitive impairment, some depression and occasional falls. We are still doing physical therapy to strengthen his arms and hands. He is unable to write very much and is dominately left handed. The occupational therapist is going to be coming to the house to see Sean in his own environment to help him improve more of his skills. He is ready to socialize with others and attend day group activities with others having brain injures. He currently is not ready for vocational rehabilitation.

It is interesting that he gets on the computer and searches the net. It is time to put his computer up, let him work with it again and see what he is able to do. He has come so far. He is able to walk without assistance, he takes care of himself, showers etc. and is a blessing. As I said before we still see small improvements everyday. The speech pathologist told us that the first thing that goes with a brain injury patient is initiative. Well the other day he surprised us, went out to the garage where we store the beer and sodas and got himself a beer. He is still a miracle and beating the odds.

Thursday, December 23, 2010

Thoughts on the Eve of Christmas Eve

As a child living in Germany, one of my favorite priests, Father Ed was always reminding us to live for today as tomorrow isn't promised and not to sweat the small things and everything can be broken up into smaller things. He loved to remind us that the self imposed stress surrounding Christmas cards was crazy. He would say Christmas cards are just that, Christmas cards. If they arrive before December 25th, they don't change the name and call them Advent cards. They were originally intended to arrive to bring cheer and good news during the 12 days of Christmas. Yeah, 1 less thing to stress about today at least. I wish I was more on top of things like many of my friends but as they still are not done, I will resolve to be more on top of it in 2011. 

This time of year my mind begins to think about the people I miss, friends and relatives who have passed away or that I have lost touch with. I have lost touch with many people I that I used to consider so important to me over the course of the last few years. I know that true friends come in and out of your life and even after long periods of not seeing or speaking with each other, you can pick up where you left off as if time had just stood still. Losing some others was completely unintentional, getting lost in the hustle and bustle of each other's day to day or possibly alienating them for reasons unknown to me or that I'm unaware. Some were probably for the best but regardless, many times life is truly what happens when we're making other plans. 

Makes me think of the lyrics to "In My Life", a favorite among my ZTA sisters in college with some slight tweaks to the lyrics. I also have various Christmas songs on rotation in my brain lately such as 'All I want for Christmas is a Real good tan', " I want a hippopotamus for Christmas', 'A Baby Changes Everything', 'Hard-Candy Christmas' in addition to various Christmas standards Wham's 'Last Christmas' but this seems to be in heavy rotation too.

In My Life - Bette Midler

There are places I remember
All my life, though some have changed.
Some forever, not for better.
And some have gone, and some remain.

All these places have their moments
With lovers and friends I still can’t recall.
Some are dead and some are living.
In my life I love them all.

But of all these friends and lovers,
There is no one compares with you.
And these memories lose their meaning
When I think of love as something new.

Though I know I’ll never ever lose affection
For people and things that went before,
I know I’ll often stop and think about them.
In my life I love you more.

Though I know I’ll never ever lose affection
For people and things that went before,
I know I’ll often stop and think of them.
But in my life I loved you more.
I love you more.
I love you more

Regardless I needed the reminder I received this morning. I've collected stories, cards, poems, images and various other "inspirations" for many years. I think I always seem to find them to make me think and receive a good "cosmic" nudge in the right direction now and again. This mornings nudge was in the form of an old card I found that my Grandpa Harry Raihl had sent me. My grandpa was not the subtle, sugar-coating type which is one of the many reasons we affectionately called him "Bear". Even though he joined my grandmother in heaven in June 2005, I think of him often and that he likes to give me a good kick in the pants now and again.

Bear loved the tazmanian devil as it was the perfect caricature of himself, symbols for curse words and all. He was an avid movie buff and collector of the  titles in the bargain bin. He especially loved those involving John Wayne, Westerns, and old war documentaries relating to his years of service in the military. As he retired in Las Cruces, he also loved the Southwest lifestyle?including growing his own Chile's in his garden, kokopellis, and the cowboy way of life. The front of the card had a poem by one of his favorite Cowboy poets, Baxter Black, which has always been one of my favorites. It's a good reminder of how to treat those you chose to be your friends.

Take Care Of Your Friends - Baxter Black

Friend is a word that I don't throw around
Though it's used and abused, I still like the sound.
I save it for people who've done right by me
And I know I can count on, if ever need be.

Some of my friends drive big limousines
Own ranches and banks and visit with queens,
And some of my friends are up to their neck
In overdue notes and can't write a check.

They're singers or ropers or writers of prose
And others, God bless 'em, can't blow their own nose!
I guess being friends don't have nothing' to do
With talent or money or knowing who's who.

It's a comfortable feeling when you don't have to care,
'Bout choosing your words or being quite fair.
'Cause friends'll just listen and let go on by
Those words you don't mean and not bat an eye.

It makes a friend happy to see your success.

And that ain't so easy, all of the time,
Sometimes I get crazy and seem to go blind!

Your friend just might have to take you on home,
Or remind you sometime, that you're not alone.
Or ever so gently pull you back to the ground,
When you think you can fly, with no one around.

A hug or a shake, whichever seems right
Is the high point of giving, I'll tell you tonight,
All worldly riches and tributes of men,
Can't hold a candle to the worth of a friend. 

I value my family and my friends more than I hope they know. I know I've been horrible lately about keeping in touch and showing my appreciation to those who know me well enough to call and check on me because a text message or a FB post doesn't sound right. Those who forgive my nerves, fumbling all over myself and making crappy jokes to cut the tension of a situation. They also know that birthdays are a big deal and must require acknowledgement from me in some way shape or form. Lastly I hope they realize that I have been working the last few years on more consciously making "notes" of likes, dislikes, and major events as to me, part of friendship means remembering or acknowledging the little things such as you prefer peanut M&Ms to plain or hate with a passion all orange vegetables. 

I realize that I'm I have a wealth of useless Entertainment and other various trivia locked in my brain, that likes to come out at various random times, not just during Trivial Pursuit. But I do also make a point to remember other stuff too. I used to have 'Life's Little Instructions' hanging on my wall for many years and one of the "instructions" was that everyone wants to be acknowledged and know that they are being heard. I have found it's the little day to day preferences that are the most surprising and appreciated. There were a lot of good ones on there including that everyone deserves a birthday cake. Why you may ask? Because a birthday is simply a person's one special day of the year that celebrates the fact that they were born and exist. Simple yet powerful enough huh?

The following is another poem a friend sent me years ago that seems to go with the theme of today's thought process. 

Around the Corner - Henson Towne

Around the corner I have a friend,
In this great city that has no end, 
Yet the days go by and weeks rush on, 
And before you know it, a year is gone.
And I never see my old friends face,
For life is a swift and terrible race,
He knows I like him just as well,
As in the days when I rang his bell.
And he rang mine if,
we were younger then, 
And now we are busy, tired men.
Tired of playing a foolish game,
Tired of trying to make a name.
"Tomorrow" I say "I will call on Jim"
"Just to show that I'm thinking of  him."
But tomorrow comes and tomorrow goes, 
And the distance between us grows and grows.
Around the corner! - yet miles away,
"Here's a telegram sir"
"Jim died today"
And that's what we get and deserve in the end.
Around the corner, a vanished friend.

Remember to always say what you mean. If you love someone, tell them. 
Don't be afraid to express yourself. Reach out and tell someone what they mean to you. 
Because when you decide that it is the right time, it might be too late. 
Carpe Diem, Seize the day! Never have regrets, learn from everything.
And most importantly, stay close to your friends and family, for they
have helped make you the person that you are today.

Pass this along to your friends. It could make a difference. The difference
between doing all that you can or having regrets which may stay with you forever. 

I hope everyone has the very Merriest of Christmas', Happiest and safest of holiday seasons. Take care and looking forward to a New Year - PK

Sunday, December 19, 2010

Sean's Big Day and is it really almost Christmas

Sean has a large multi-doctor panel review tomorrow at the Denver V.A. hospital. I took the day off of work because his appointment is at 12:30 pm and that's my normal in time on Mondays. I knew that it would be better for Omee (my mom) and Uncle Sean to have a Mommy/daughter day with Miss Delaney than to have them both try to juggle her and possibly lose focus on his tests. I have no idea what all is involved but it just really hit me that tomorrow is a big day for him. It will be 2 years since his emergency open heart surgery and resulting hypoxic-anoxic brain injury on January 15th. I am so grateful, blessed, honored and thankful to everyone for their thoughts, prayers well wishesm distractions and events of joy you have shared with us that have helped us all get through this challenging time in our lives.

It's hard to believe that's really been almost 2 years. My parents have found out through our research that it's a general rule of thumb that with traumatic brain injuries, generally 2 years is the benchmark for progress and recovery. Anoxic brain injuries or those that are the result of a lack of oxygen to the brain are more unpredictable in their progress and recovery path. Sean began working with the V.A. at the end of October doing Speech therapy via video conference at the facility here in the Springs and meeting with a Physical therapist. From what I understand this multi-panel review will help determine where Sean is in his recovery and where we go from here.

Initially after he came home in May of 2009, he was receiving Occupational, Physical and Speech Therapy multiple times a week. When his approved visits were done for the year, I thought we were waiting for his insurance company to re-approve him for the remaining months of his Cobra coverage in 2010 but that never seemed to happen. Not that his insurance company didn't pay more than it's share for his emergency admittance, diagnostics, emergency open heart surgery, stay in the CCC at the Medical Center of Aurora, stay at Triumph, return to the CCC, additional surgery, and finally his stay at Spalding Rehabilitation Center before coming home in May of 2009. I don't believe my parents ever saw a bill for his Hospital stay and the Cardiac Critical Care Unit is not cheap by any means. I think we were told he was in the 5- figure a day cost bracket.

As a thank you to all the doctors, therapists, nurses and administrators that helped take care of Sean during his long 5 months, my parents and Sean hand delivered Edible arrangements to each department, office and care center. Even though Sean didn't necessarily remember all of them, they definitely remembered him. Sean's definitely never has been or probably ever will be your average patient. They all were touched by the gesture and happy to see him up and moving around instead of how he was when he was in their care. It's one thing to see the patient that you're taking care of and another to see them after they've been back in "the real world I guess.

So tomorrow is a big day for him and my parents. Delaney and I will be visiting with my best friend and goddaughter up in Firestone. It doesn't hardly seem like it's about to be Christmas in 6 days. Probably because of the lack of snow except a day here and there in Colorado Springs and abnormally warm temperatures aren't helping. Also we've been short staffed at work so I've been working LOTS of Overtime. Half the time I don't know what day it is. Tomorrow is basically my 1 day off this week and I have 1 day next week . Hopefully tomorrow will help put me back in the Holiday spirit. Cross my fingers, say some extra prayers for him and will keep you updated =S

Tuesday, November 23, 2010

Update #71 October 10, 2010

sunday, october 10, 2010

Update #71 October 10th, 2010

Sean saw the VA neurology rehabilitation doctors today to evaluate his progress and to decide on the next direction to pursue. I was scared and anxious. To us he is still progressing slow but sure, but it was now time to see what the experts thought. They doubled one of his medications to stimulate the brain more for a couple of weeks. They want to see if we will see even more improvement in his cognitive levels. He had started the medication last December and it seemed to have helped, so we are hopeful. Sean will start speech therapy and physical therapy again. He still needs to strengthen his arms, hands, balance and projection of his voice. Sean is focused on getting another Hummer -- no surprise there. He has really progressed on the computer so much so that he is able to look up various sites for Hummers. The doctor told him he isn't ready yet but that if he continues to progress and gets stronger there is a driving center that the VA system has that would be available for him to use when he is ready. I have to be honest; I wasn't sure he would ever be able to drive again but didn't want to discourage him. He is a miracle, still making slow but sure progress. It will be 2 years in January; we are thrilled with his progress and hopeful for his future. I asked if they would be doing another MRI and was told no, they wouldn't do one unless he stopped progressing or regressed.

Saturday, August 21, 2010

Updates #69 & 70

thursday, august 12, 2010

Update #70, August 12th, 2010

Sean is still progressing with some really new things of late. He has been taken off several medications and is responding more and more. He is expressing himself more which is refreshing. The other night CSI Miami started, even though it is a rerun Sean enjoys it, Paulette changed the channel. Sean got up said "well I might as well go to bed". Needless to say I set up the TV so he could watch CSI in his bedroom. We went looking at cars and he really enjoyed that on Tuesday. Again fitting into a car that fits 7' and a 42" inseam is fun on the passenger side. He wants to look at a Hummer so that will be another day. He has several appointments set up with the VA doctors and we look forward to making more progress. Until next time God Bless and thank you for continuing to pray and thinking of him.

tuesday, july 6, 2010

Update #69 July 6, 2010

We had a quiet 4th of July, Paulette was working and I mentioned to Sean we should tape the beautiful fireworks we were watching on television with the Boston Pops so she could see it later. He replied "Paulette can walk outside and see it for herself right now." I almost fell off the couch. He is talking much clearer and I ask him questions that require an answer other than just "yes or no". He is using his hands more and is not quite as frustrated. We went up to Denver and took Editable Bouquets of fruit as thank you gifts to various people and units at one of the 3 hospitals. Sean didn't remember the people but they remembered him. I wanted him to give them the thank yous so they could see him and how much he had progressed in the last 18 months. They were impressed as almost all of them had only seen him prone and pretty out of it.
We will deliver more next week when some vacations are done. Still hanging in there and glad for each and every day. Thank you for your continued thoughts and prayers.

Quotes of insight, inspiration and ambiguity

"A pearl is a beautiful thing that is produced by an injured life. It is the tear [that results] from the injury of the oyster. The treasure of our being in this world is also produced by an injured life. If we had not been wounded, if we had not been injured, then we will not produce the pearl." Stephan Hoeller 

This quote inspires me and makes me think about Sean. It's been over a year now since his emergency open heart surgery that nearly took him from us and left him with an anoxic/hypoxic brain injury. What is an anoxic/hypoxic brain injury you might ask? In Sean's case, sometime during his 10 hour surgery his blood pressure got too low and his brain didn't get enough oxygen. From what I understand from this lack of oxygen damaged his mid-brain area. The mid-brain is the integration center from your higher brain functions like coordination, intelligence, and telling your motor neurons what to do. He's still re-learning, healing and recovering every day. He enjoys spending time with Delaney and they have a mutual admiration society. My mom has the patience of Job and sometimes has more than her hands full with the two of them. I'll be glad when D starts preschool 2 days a week this fall so that mom will get more of a break than just my days off. 

Sean is becoming more pronounced in his opinions and more vocal with his likes and dislikes. He will play his hidden picture/object games for longer periods of time and is more vocal about what he does and doesn't want to watch, participate in etc. He has different "flashes of memory". Vivid memories I have from our shared childhood, he may or may not remember. During one of Sean's rehabilitation appointment's Dad was told that brain injury patients are more sensitive to barometric changes than your everyday person. Mom and I thought we shared the label of the family human barometers as different aches and pains seem to appear when the weather changes. 

As 2009 drew to a close, Sean continued to be covered under his old employer health insurance and his COBRA election. Initially I thought he was waiting to hear about his approved rehabilitation visits for 2010 but I don't believe we every got that news. His coverage through COBRA expired at the end of May and my parents had already working on his benefits through the VA. When he first moved out here he had been evaluated for his benefits and hand delivered his medical records from his years in the Air Force. Leave it to a military brat who has spent anytime overseas to know how to guard and deliver important documents. Even in the electronic age, the unexpected happens all the time, so plan for all contingencies. If it's important, keep the original in a safe place (strong box, fire proof safe, safety deposit box, etc.) and/or always get a back-up copy.  

My hope is that now that he is getting into the VA system he will be able to help him find the therapy options that he needs. We don't know what the future holds but we thank everyone for their continued well wishes, thoughts and prayers for Sean and our family. We love and appreciate them all. One of my favorite girlfriend's from college, Gentry has a wonderful quote on her FB which perfectly sums up where I think we're all at right now. 

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity. - Gilda Radner

Sunday, June 6, 2010

Sean's Latest ... Update #68 Memorial Day 2010

monday, may 31, 2010

Update #68, Memorial Day 2010

Today is a wonderful day to remember that Sean served in the Air Force for 10 years with a great amount of pride. He would still be serving as he loved being a legacy. Today he is quiet as his allergies are really bothering him. His appointment at the Veterans clinic had mixed answers and I had mixed emotions regarding those answers. The doctor felt that Sean is unemployable, I would agree for today but not necessarily for the future. He requested some additional paperwork for him. He also wants Sean's disability reevaluated to see if the injured valve in his leg; which he had while in the Air Force, could have been a contributor to his throwing blood clots and the ultimate heart surgery. He still is progressing slow but steady and continues to surprise us with his memory and what he is able to do on a daily basis. Don't count him out he is our miracle still in progress. Thank you again for your thoughts, prayers and warmth, you are a blessing to his recovery.