Full Circle…Almost

This past weekend (Labor Day), Taylor and I went to Boston to move her back to MIT.  It has been just over 1 1/2 years since her cardiac arrest, and a stark contrast to the last time we were here.

Last time, it was late February (winter).  I remember walking back and forth through the cold, wind, and occasional snow, over Longfellow Bridge between MIT (where I stayed) and MGH (where Taylor was in the ICU).  For nearly 5 weeks I did this, choosing to walk to clear my head of the sadness and dread of what we had been told was Taylor’s prognosis, instead of taking the T, even though MGH was only 1 convenient stop away.  This time, it is summer and hot and humid in Boston.  The town was even experiencing somewhat of a heat spell being in the 90s.  Taylor and I both sweated as we walked around buying things we forgot or neglected to bring for her dorm room.  This time, the bridge we walked over and back together was Harvard.

Last time, we were taking her out of school with heavy hearts.  This time, she is returning to school with much hope.  As the other students were moving back in, too, there was a lot of excitement and energy on campus.  Taylor confided, however, that she was feeling overwhelmed at times.  We both knew that she was not coming back to MIT with the same capabilities as when she first started as a freshman.  Even though she is only taking 2 classes to start, it will be challenging for her.  She still has trouble with her activities of daily living (ADLs) – the many things you and I take for granted – like untwisting caps, handling money, writing/typing.  And she still has only limited functional sight.  She is coming back with assisted technologies (Orcam, Dragon Dictate, Kurzweil) and assistance from the Students with Disabilities Office to help her with her classes.  Her intellect is intact, but her processing speed and multi-tasking capabilities are still troublesome.  Her brain requires her to focus on one thing at a time; otherwise, she gets frustrated.  We anticipate that all of these things will continue to improve, but this will take time.  Despite these challenges, Taylor is determined to resume her studies at MIT.  That is what is so amazing about her.  She sets goals and goes for them.  Here is a picture of Taylor in front of Building 7 off Mass Ave.

Now that Taylor has returned to MIT, this may actually be my last post, since I will not be privy to what she does every day.  (This is a good thing because it means that she is becoming independent again!)

As such, I want to take this opportunity to thank everyone who has been involved in this journey with us - for the people who contributed money either through the GoFundMe page or to us directly, for the people who bought us plane tickets when Taylor was at Craig, for housing, for the many words and letters of support in cards/letters or commenting on this blog, for the gifts of audio books, food, dinners, blankets, prayers, for checking in on Nathan when we were away, and all of the caregivers who helped Taylor so much.  Thank you; we would not be where we are today without you.

A New Look

I know it has been a while since we’ve posted, but we’ve been busy!  Taylor continues to attend classes through Santa Monica Community College (SMCC) 3 days a week and attends rehab at the Centre for Neuro Skills (CNS) 2 days a week.  She is currently working on her re-application packet to MIT.  In preparation for returning to MIT, she is taking an assistive technology class at SMCC where she is learning to use programs like Dragon Dictate and Kurzweil.  Dragon Dictate is a dictation program, which captures her spoken words and translates them to written text on the computer.  Kurzweil is a text-to-speech program that will read aloud text that is on her computer (from websites, word documents, etc.).  These 2 programs help her with the biggest challenges that she still faces since her injury:  fine motor skills and sight.  At CNS, she continues to get physical, occupational, and cognitive therapy.  She is also beginning to feel more comfortable doing things on her own, such as going to the local coffee and sandwich shop by herself.  Another change is that she cut her hair short, which is much easier to manage on her own.

Today, Taylor and I took a CPR class.  Taylor felt that it was very important for her (and everyone else) to learn CPR because no one performed CPR on her when she had the cardiac arrest.  The instructor was especially moved that Taylor was there.  She (the instructor, an EMT) said that she has only known one other person who had survived a cardiac arrest.  So, learn CPR if you don’t know it.  You could save a life!

Appointments and Making Plans

Hello, I know we have not been updating as often as we should, but Taylor’s recovery is not as dramatic as it was in the beginning, so there is less to report these days.  That does not mean that she has stopped recovering, however.  She continues to make little gains, which are usually not noticeable to those of us who see her everyday but is noticeable to those who only see her on a monthly basis.  For example, we recently had an appointment with her EP cardiologist who saw Taylor about 6 months ago.  He commented that her speaking had improved so much and he could see she was getting better.  Also, her ICD is functioning well and her heart has not shown any issues, even with the running (walk/run 2X around a track about once per week) that she has started doing.

We also recently had an appointment with a neuro-ophthalmologist.  He measured her field analysis, and it had improved 6 points compared to when it was checked last in October (3 months ago).  He said that he expects it to continue to improve, especially because she is young.  Although her eyesight has improved considerably since she first “woke up,” it is still not considered functional.  The physical anatomy of her eyes are completely normal, it is that her brain cannot make sense of what she sees, and the doctor says that this takes time to repair.

Next month, Taylor will start classes through a special brain injury program offered at Santa Monica Community College.  These classes will not likely be intellectually challenging for her (one is a counseling class, one is a technology adaptation class), but they will be good practice for going back to school (sitting in class, taking notes, etc.)  When these classes begin on Feb. 17, Taylor will only be going to CNS 2 days a week.  CNS has been great in helping Taylor get back to independence, but it will be good for Taylor to be back on a college campus in anticipation for returning to MIT.

Good-bye Handicap Placard!

As you may recall, when Taylor first returned to Los Angeles from Craig Hospital, she was still in a wheelchair.  It actually is a BIG help to be able to park in one of those large handicap spots if you have to wheel a wheel chair next to the car to get your passenger in and out.  Thus, we applied for a handicap placard when Taylor first returned home.  I remember when we went to the DMV to get the handicap placard with Taylor.  We had filled in the application to get the temporary placard.  When she saw this, the woman behind the counter helping us said, “Are you sure you don’t want to get a permanent one?”  “No!” we said.  We definitely wanted the temporary one because we only wanted positive energy that Taylor was getting better.  It struck us as strange that we, not a physician, could choose whether we wanted a temporary or permanent placard.  Also, it cost $6 to get the temporary, whereas there was no cost to get the permanent placard (no wonder the system is abused).  The first time we tried to use the placard at one of Taylor’s doctor’s appointments, all the handicap spots were taken, despite there being 2 long rows on 2 different floors of designated spots!  We ended up parking in a regular spot, which happened to be barely large enough for me to move Taylor’s wheelchair between our car and the next car.

Well, yesterday, Christmas Eve, Taylor’s temporary handicap placard expired, and we are not renewing it.  If you have been following our posts, you will know that Taylor has been walking for some time now.  She is even getting into and out of cars by herself and can buckle her seatbelt by herself about 75% of the time.  Good-bye handicap placard!

Celebrating the Holidays

Link

It’s hard to believe that it’s that time of year again. Last Christmas was the last time that we saw Taylor before her accident.  I remember we climbed the Culver City stairs, which are a set of very long and tall steps going up a hill, and looked out over the hazy (smoggy?) city of Century City.  Taylor had climbed the stairs before, but this was my first time, despite having lived in LA for over 10 years!  Of course, she would not be able to climb all those stairs again this Christmas, but she will be able to again one day, as she continues to get stronger and build more balance.  She has recently been working on climbing stairs with only one foot on one step at a time and without using the handrails.  She has even climbed 4 flights of stairs in the parking garage to my car at work when the elevator was out.  This was tiring for her, but she could do it, and little by little, she gets a little bit stronger.

We also have been making Holiday cookies, which is actually very good occupational therapy for her because she needs to use her fine motor skills to roll, cut, and decorate the cookies.

We wish everyone Happy Holidays, and thanks for keeping up with Taylor!

Taylor’s Birthday

Hi Everybody!  This is Taylor, and I’m dictating to my mom.  I’ve had requests to author a post, so here it is.  You may be aware that my 21st birthday was last weekend.  It was bittersweet because I cannot drink due to the brain injury.  Still, it was a good birthday.  My family, Veronika from MIT, and I went to a sushi restaurant.

The food was yummy!  I had no idea that Veronika was coming into town, so it was a happy surprise.

I don’t know what else to write, so you guys can ask me questions, and I will reply to them on this blog.

Challenges with Fine Motor Skills

Probably the 2 most challenging things for Taylor these days are her fine motor skills and her sight.  Her fine motor skills are still developing but not yet back to the point where she can type or text.  She has the new iPhone, which has accessibilities (voice-over) for sight impaired people and Siri to tell it commands, so that she can start to check her messages and make phone calls on her own.  Her biggest frustration is dressing herself.  She still requires moderate assistance to get dressed, and it is frustrating for her that she cannot do this herself.  Of course, her imperfect sight contributes to her not being able to learn this faster.  She cannot see exactly where the arm hole is in the t-shirt where her arms need to go or where the leg-hole is in her shorts where her leg needs to go, for example. With her sight, she can now read short sentences on flash cards.  However, she cannot see the whole sentence at once, like you or I can.  She has to read one word, remember it as she scans for the next word, and then eventually put the whole sentence together.

As I said, her motor skills are improving.  Recently, she has been practicing her writing at CNS.  I saw her write her name for the first time since her accident, and I was over joyed!

On another note, the paper that Taylor co-authored (May 21 post) has been published in hard copy.  The paper made the cover of that journal’s issue. Taylor’s former graduate student mentor (James, now a PhD – congratulations James!) sent her a framed, author signed copy of the cover, which now hangs in her room.

There are days when the frustration leads to tears, but as a friend said to me, we should be worried if Taylor is not frustrated. That she is frustrated means she wants to improve; and that’s a good thing.

New Plan

Taylor has been attending CNS full-time for about 3 weeks now, and it’s going very well.  She likes that she has days that are full, because she is still someone who likes to stay busy.  Her original plan was to go back to MIT in January 2015, which would be just short of 1 year since her accident.  However, she probably won’t be ready to go back by then because she and I are both discovering that neurological recovery is a very slow and long process.  Although she continues to make improvements, she will most likely not be back to independent living by January of 2015.  Her new plan is to go back in September 2015, probably part-time for 2 semesters, and then finish full-time for her last 2 years.  This, she calculates, will put her 2 years behind her original class (2016).  The amazing thing is, she came up with this plan all by herself.  She understands her limitations in a very mature way, but is still driven to go back to school.  We had our first family meeting at CNS last week, and all the therapists said that Taylor is the perfect patient.  She is pleasant to be around, does everything they ask, and is completely motivated.  Taylor still continues to amaze me with her upbeat attitude and determination, despite what she has been handed.

7th Annual Walk for Brain Injury

This Saturday, Sept. 13, Taylor and her family and friends will be participating in the 7th Annual Walk for Brain Injury Association of California (BIACAL) at Santa Anita Park.  Founded in 2005, BIACAL is a chartered state affiliate of the Brain Injury Association of America (BIAA), the country’s oldest and largest nationwide brain injury advocacy organization. With a joint mission to advance brain injury prevention, research, treatment and education, BIACAL strives to improve the quality of life for all Californians affected by brain injury.

Taylor has her own donation page to raise money for this worthwhile non-profit organization.  If you are interested in donating, please visit her page at:  http://biacal.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15325

Thanks!

 

6 months

Today is a momentous day for 2 reasons.  The first is that Taylor’s brother, Nathan, turned 18 years old.  The second is that today marks 6 months since Taylor had her cardiac arrest on Feb. 22.  Six months ago, we got that fateful call that said Taylor was in the cardiac intensive care unit.  She spent the next 5 weeks in a coma/semi-vegetative state.  She spent another 10 weeks in rehabilitation at Craig Hospital.  She has been home for 9 weeks and goes to outpatient rehabilitation sessions.  When she came home, she could walk some with assistance but mostly, she was wheelchair dependent.  She took showers using a shower chair, and needed help to transfer from the wheelchair to the sofa, bed, dining room chair, toilet.  She could not feed herself.  Now, she walks on her own; we have put the wheelchair away.  She gets around the house by herself and goes from bedroom to living room to kitchen at her will.  She does not use the shower chair anymore and can use the toilet by herself.  She can feed herself.  She can almost get out of bed by herself, and she continues to build stamina to walk long distances.  She is working on getting dressed (and undressed) by herself now.  It is a very slow process, but she continues to make gains.