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.

Resistance is futile

A couple weeks ago I received an Orcam. An Orcam is a wearable technology that you mount onto your glasses and it reads to you. It includes a camera that is aligned to your line of sight and a speaker close to your ear. All you have to do is press a button or point and the device will start reading the text in front of you. When I first started using it, I was amazed by how accurate it was. Of course, it does have its drawbacks. If the lighting is poor or you do not hold the reading material steady, it cannot read it. All in all, the Orcam is a wonderful technology, and I am very lucky to have it. There is a video of me using the technology below.

You can learn more about the Orcam by visiting their website. <http://www.orcam.com>

A special thanks to James Dahlman for doing all of the work to get me set up with my new Orcam.

By the way, I will be heading back to MIT in September.

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!

WOW What a difference a year makes!

The good news is that this is my last post. I say good news because it means Taylor is moving along so well that a site dedicated to her recovery seems out of place. Kit and Taylor may still make a post every now and then, but this is MY last post. Indeed, the biggest challenge now for her, and everyone else, is to move past what I call “Brain Injury Taylor” and back to just plain “Taylor.” For sure, she has a long way to go. She works very, very hard to relearn her ADLs (Activities of Daily Living), but she will definitely get there; it is just a matter of perseverance.

Of course, it is not easy, and I don’t want to diminish the hard work Taylor is still doing. To relearn how to put on a T-shirt, Taylor worked every day for about 30 minutes for three months. Struggling for thirty minutes only to have it end in total frustration again and again every day for three months. But at the end, she got it, and every day she learns a little bit more, gets a little bit faster, and sees a little better on her way back to a total recovery.

Total recovery seems inevitable now, but that was not always the case. For sure, there were some dark days that made this idea seem ludicrous. When we first went to Craig Hospital, they assembled a team and had a meeting with us and asked what we were expecting. I wasn’t prepared to answer this question and just blurted out “Total Recovery.” They were all too professional to roll their eyes, but I’m sure they were thinking this idea was a little nuts. Then there was the time at MGH in Boston where one of Taylor’s friends was in the room, Taylor was unconscious and had been for several weeks, and I was saying to her, as I often did, that she was going to come “all the way back.” This made the friend sad. Like all of Taylor’s classmates, he was too smart and logical to buy into such a fantasy. Nowadays, this idea gels more with logic, and it’s a lot easier to hold this view, but I always knew it would happen.

Here is a new video of Taylor walking:

Although it is hard for those that see her everyday to notice the improvements she is making, a look at a prior video (http://taylorisperfect.org/?p=658) reveals a startling difference.

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.

Some New Videos

Taylor has been making great progress. Each day she pushes herself a bit more to get better at each little task. Sometimes I want to help her so much. It would be so easy to just adjust this or that so she can pick it up, or close it, or button it, or whatever the case may be, but she usually refuses my help so she can learn the task through struggling.

Stair Climbing:
Taylor has been climbing stairs for a while but her skills are always getting better. She has progressed from one step with the same foot to one step with alternating feet to two steps with one foot to what you see here which is alternating feet taking two steps. This was a few weeks ago, nowadays she is taking steps without a hand rail.
Here she is climbing up the stairs:

And here she is running: