Brass Rat

Today Taylor got her “Brass Rat” in the mail from her roommate (thanks Kyra) at MIT. She was really excited about it. Brass Rat is the name of the MIT class ring. Like many things at MIT there is a lot of thought and design packed into it. Taylor and I went to a website so I could read all about this year’s design. Taylor explained all the references that only MIT students would understand (like what “IHTFP” means.) Ordering the ring was one of the last things Taylor did before her health challenges started. After placing the ring on her hand, being careful to have the rat facing her, we took a picture:

She lamented that she wasn’t at the ring delivery ceremony in person, but was glad some of her friends called when they were there so she could hear the excitement of the event in their voices.

We then got to talking about MIT and she taught me why the beaver was chosen as the school mascot, beavers are hard working nocturnal engineers. She then taught me what must be the nerdiest fight song in the history of fight songs, the Beaver Call which she knew by heart. I kept thinking she was not being clear enough when saying lyrics like “du dx.”

She then asked me if she could return to MIT in the fall and I said it’s hard to tell but that it had a low probability. “How about in spring 2015?” I told her that it is impossible to tell when she will return, only that she will return someday.

Returning to school is her primary motivation. In some ways it seems cruel that after working so hard to get there in the first place she now has to work ten times harder just to get back. On the other hand it is great gift in life to have a clear goal and graduating from MIT and being able to turn that ring around is hers.

Beautiful Girl

Taylor had an elevated heart rate on Friday night, slightly over 100, but nowhere near where she was in Boston.  It was enough however, to prompt the nursing staff to restrict our movements to inside the hospital walls. Taylor, John and I had been looking forward to spending time outside, enjoying the blooming tulips in the beautiful garden and perhaps exploring the immediate neighborhood around Craig Hospital.  Her heart rate is back to normal now.  This episode is making us more seriously consider getting the defibrillator procedure done sooner rather than later since it will allow her more freedom while in in-patient care and the ability to lead a normal life without constantly having to worry about the possibility of another cardiac arrest.  She was very interested in learning more about the procedure and we watched / listened to a video together that explains it in great detail.

Other than that, we spent the day catching up on Reddit news posts and listening to some of her favorite songs she used to play in the shower at MIT.  Taylor was so happy singing and tapping to the tune of “Primadonna Girl”, that I could not help myself to move and sing along with her.

Later she had a phone call with her brother Nathan where she gave some secret pre-prom advice.

Battle Scars

Taylor had her dressing replaced for the stoma (hole) of her tracheostomy. While looking at it, the care givers told her she would likely have a scar but that she could easily put make up over it. She responded that she wouldn’t mind having a few battle scars and plans to display the spot proudly. A nurse then told a story of another patient who went around explaining her car accident scars as a hippopotamus attack. Taylor is still deciding how she plans to explain her scars.

Taylor and I also had some good conversations about her medicine and how to handle her sleep, or lack thereof, for the last two days. She is back in charge and more or less managing her own affairs, health care wise.

She has also returned to a phrase she used to say all the time when she was a teenager. “Daaaa-ad,” complete with eye role! She is really getting back to her old self more and more each day.

 

In Good Standing

Standing

Today Taylor stood up in physical therapy with the help of a standing machine and two helpers. The machine is made to mimic the motion of standing from a seated position. This is better than just pulling her up as it works all the right muscles. All the help is there to ensure that she is standing correctly but she is still doing the work.

Singing Therapy

Taylor has devised her own therapy method. She sings along to the songs playing on her Pandora mix. It is amazing to watch and a big hit with all the staff on the floor. This is amazing considering it takes her a beat to form words. To line up her words to the music she has to accurately gauge the time between when she “places the order” to speak and when the words actually come out. She manages to line up the words with the song exactly.

Team Lew

Taylor’s aunt Pansy came by with another load of home cooked meals for Taylor’s out of town family staying in Denver (right now just me) and chopped up some for Taylor so she could have a home cooked meal as well. The local family support we have received in Denver has been spectacular.

Tracheostomy Removed

Taylor had her Tracheostomy (breathing tube) removed today. It took about one second and was uneventful, but it’s one tube removed closer to getting back to normal. She has to lay off the talking for a while to give her dressing a chance to stay in place while her skin heals. She still manages to let me know what she needs with abbreviated sentences. For instance, as I was leaning over her asking what she wanted to tell me she said, “Bad breath.”

Yesterday, Taylor’s Uncle Hung, Aunt Erika, and their children came to visit. After eating dinner with them, Aunt Erika fixed her hair while the guys were dispatched to get something called “hair detangler.” After they left, Taylor’s Aunt Pansy came over to help put Taylor to bed. At one point, I was massaging her shoulder, Pansy was massaging her legs, and the nurse was fixing her pillows. Although this was all happening because she was pretty uncomfortable with muscle irritation, I told Taylor this must be what it was like for Cleopatra. She responded by saying, “Itch my nose,” which got a good laugh all around. She eventually got to sleep and slept all night.

This morning in physical therapy, she did a bunch of neck exercises and was stood up on her knees. It was a real workout, and you could see her straining, but she also really appreciated it. Later while napping, she woke up suddenly, perhaps from a dream, and started saying, “I want to move!  I want to move!” At first I didn’t know what she meant. Through questioning, she explained that she wants to control her body. We did some arm exercises. She is one motivated student and really giving it her all.

Tonight she was going to “sleep” smiling and laughing while listening to the book “America Again” by Stephen Colbert.

 

What Taylor is Like Now

These days, it seems friends and family members of Taylor have very different ideas of Taylor’s current health. This website is partly to blame, since we don’t always do a great job of explaining the details. Here is a clear picture of Taylor’s health as it stands today.

Physically

Physically, Taylor is in pretty good shape. She has none of the typical ailments that cause problems with a prolonged hospital stay, like bed sores or pneumonia. She has a feeding tube in her stomach that is being reduced each day now that she is having no problem chewing and swallowing food. She also has a tube in her throat (tracheostomy) that is capped, which will be removed all together, any day now. She has lost some of the flexibility in her arms and legs. She has lost some weight but not an excessive amount.

Mentally

Mentally Taylor has come a long way but still faces a few challenges. The areas where she is still recovering are motor skills, consciousness, memory, vision, and personality.

Motor Skills

Motor skills are the most obvious of Taylor’s challenges. She pulses her arms and upper body continually when she is awake. It is slight but noticeable. It is these movements that cause her arms to end up in the same positions, one extended, one contracted, for long periods of time. For this reason, she wears splints that hold her arms in a neutral position much of the time.

She works very hard to control each and every motor operation. This includes any non reflex motion and includes swallowing and limb movement. It’s like she is searching for the right connection to fire to control each movement. It takes time to start a movement, and the movements are slow and prolonged. You can really hear and see this in her speech. You will ask her a question, and she will start processing the response, a beat, then the beginning of the response movement will start slowly, then she finishes the movement and repeats the process all over again for the next motion. When speaking, this happens on each word. Using this deliberate process, she has good control of her legs and can use them to move her body around. She has some control of her arms and fingers but cannot use them in any useful way at this time.

Consciousness

Despite having slow responses when trying to purposely move her body, Taylor’s consciousness seems to be intact and quick. You can really see this when she finds something funny, as she fires the reflex to laugh instantly without the delay found in her non-reflexive movements.

Memory

Unlike many anoxic brain injuries, Taylor can use all types of her memory. She can remember things from the past, access her short term memory, and form new long term memories. Her recent pre-injury memories are not intact. Most past events she remembers clearly, but there are some, which pre-injury Taylor would’ve remembered that she can’t recall now. There seems to be no pattern as to which memories she retained.

Vision

Although Taylor’s eyes are most likely functioning the same as they did pre-injury, she has limited ability to “see” things neurologically. She can see colors and position and in bright light, make out objects and faces.This should improve but the extent of the improvement is unknown.

Personality

Although Taylor is mostly her same old self, her personality is healing along with the rest of her brain. During Taylor’s stage of healing, brain injury patients typically have amplified emotions. In Taylor’s case, because she is naturally silly, giddy and giggly, this means we spend most of the day laughing at silly stuff. Most of what she laughs at is not something Taylor would have laughed at pre-injury (example: Dad’s jokes).

She is aware of this difference, and this awareness could be seen when she talked today with some of her friends on the phone. After spending the entire day laughing with me, Taylor became very guarded when talking with her friends on the phone. I could tell she was aware of her personality changes and was responding by being less forthcoming. (If any of her friends are wondering why Taylor hasn’t contacted them, this may be why.) This is a natural response. Rest assured, Taylor is every bit as silly and fun as she ever was.

“I have a lot of thank you cards to write”

Taylor loves hearing messages from from all of you who have left them here and on her phone. She is amazed at how many of you write in. Today, we re-read several days worth from the website. She always smiles and is glad to hear the names and comments and is quick to laugh at any joke. She always has a big smile when I mention Mimi’s name, as Taylor can’t believe how often Mimi leaves a comment (thanks so much Mimi!). After hearing many messages, she said, “I have a lot of thank you cards to write.” Unlike her Dad, Taylor has always been awesome at sending thank you cards whenever she receives a gift or when someone does a favor for her. I’m sure one day when she is more able to do so, she will set about writing “thanks” to everyone she can, even though the list is long and growing each day. I will tell her, “No one expects you to write all those thank you cards,” and she will reply, “Don’t worry about it, Dad.”

In addition to the comments written on this site, she has received many text messages on her phone. These are generally different from the website messages in that they are more personal and playful. Most are surprisingly long and thoughtful. I ask Taylor how to reply to these messages, and a few times she said, “I don’t know what to say.” Later, she decided, “I will respond when I can do it myself.”

As I read all of these messages to her, I feel amazed at how many friends Taylor has made who have such great things to say about her. Unknown to me, Taylor has gone through life helping people in need, in small and big ways. Most of the stories are about Taylor seeing someone in need and introducing herself and offering help. These encounters end up in friendships, some lasting, some brief, but all of them meaningful to the people she encountered. One of the long text message stories was about how Taylor befriended someone and helped her through a tough time. It was so moving and beautiful that it left me in tears. I asked Taylor if I could ask the friend to put it on this site, and Taylor said “No, it might make her feel uncomfortable.” I continue to be amazed as I learn so much about Taylor that I didn’t know before.

On behalf of Taylor, thank you everyone for all of your support and kind thoughts.

Pancakes and Sushi

Taylor is eating more solid food. This morning, she had almost one whole large pancake (with butter and maple syrup, of course). Lunch was a small dish of creamed soup and 1/2 an avocado (with lemon, of course), and at dinner, Kit’s cousin Pansy and her son, Joshua, treated us to some take-out sushi. Taylor ate a whole serving of miso soup, one piece of albacore sushi with rice, and 1/2 avocado with lemon. Her dietician has decreased her PEG tube feeds in an effort to stimulate her appetite, and it’s working!

On another note, Taylor’s speech therapist said that Taylor has already exceeded the goal she set for Taylor when she first arrived at Craig – talking.  So now new goals have to be made. This is all good!

A Whole Avocado

One of Taylor’s favorite foods is avocados. Now that Taylor can eat mashed up food, she can eat smashed avocado! Last night, Kit’s cousin, Pansy, brought over 2 beautiful avocados. Today, we surprised Taylor at lunch with 1/2 of one avocado that had been mashed with a fork. She ate it all! (She did say, however, that it needed lemon.) This is saying a lot because Taylor is not digging the mashed potatoes or cream of whatever soup she has been getting. For dinner, she ate the other avocado half easily, especially because we found some lemon to go with it.  This was a nice treat that brought some California home to her.  Tomorrow, she will eat the other avocado :)

Therapy-wise, Taylor went to her usual physical, occupational, and speech therapy classes. She got a smaller wheelchair today because the staff did not like how she sat in the other chair, and she got custom fitted for a new splint on her left hand. In speech therapy, the therapist gave her some small pieces of cracker to eat, and tomorrow, Taylor can start to try to eat more solid foods that soften easily with liquids.

We have finished listening to “The Hunger Games” and are now listening to the next book, “Catching Fire.”

 

Donations

After some friends of Taylor learned that her air ambulance from Boston to Denver was not covered by insurance, (it was a mad dash to pull together the considerable unexpected cost and pay for it that morning) many of you suggested we start a fund to collect for just these kind of expenses. We initially resisted out of stubbornness but a family friend, Alison Glen, took matters into her own hands and generously set up an online account to accept donations for Taylor at the following web address:

http://www.gofundme.com/80y39o

Any funds collected will be put toward expenses not covered by insurance to help her development. Examples may include equipment and expenses used to setup a home for Taylor in Los Angeles after rehab. Any help you give is greatly appreciated.