A Much Better Day!

Today Taylor woke up dealing with a progression of issues that seemed to indicate a negative outlook. First, a few weeks ago, she was not allowed outside for heart reasons. Then she had a low magnesium value that led to her taking pills that made her constantly nauseated. The values stayed low so the pills were doubled, which led to more nausea and a loss of appetite. Then they were doubled again, which led to vomiting and missed therapy sessions. Then she went on magnesium IV that was hard to place and had to be replaced a few times with several needle sticks each, resulting in constant muscle irritation in her left arm. Then the I-V dose was doubled making her stay in bed longer and causing more muscle irritation. All this time, Kit and I are doing everything we can to shove pumpkin seeds, bran cereal, halibut, spinach and other high magnesium foods down her throat. Finally, to get even more magnesium in her system, they returned to using the feeding tube which Taylor was hoping would be removed instead of reinstated. The end result was a tough situation for Taylor to keep her spirits up.

All of these events add up to a setback. Setbacks are to be expected in any recovery but that doesn’t make them any easier. Because Taylor has an amazing reputation around the floor for always being so cheerful and happy, it was hard for all her caregivers to see her so down, especially me. The staff at Craig has been incredibly caring and compassionate through this, including her nurse last night who stayed with Taylor to talk at length in the wee hours of the morning when she woke up very concerned about her situation. Luckily, all this was a minor setback in the big picture of things that could go wrong with a long hospital stay.

Now for the good news: Taylor had a much better magnesium level this morning. So much better that her doctor decided to check it again 5 hours later, just to be sure. The magnesium pills and I-V drip are now stopped. She also now has a life-vest defibrillator that allows her to go outside the hospital for a few hours a day. It was also a sunny great day. We spent some time just hanging out in the garden where Taylor was back to her happy laugh-y self. We had a good laugh about all the goings on and reminisced about some of the fun times from the past. Later we had a great meal, made by cousin Pansy in the apartment I am staying in on the Craig campus. It was wonderful to have a real family dinner after eating in the hospital for so long. Later, Taylor got a few very welcome calls from friends.

We don’t know if the magnesium levels will be consistently good/normal, but it was fantastic to see Taylor so happy again.

Now that we can breathe again, we can reflect on how this episode is also a great lesson about setbacks. No matter who you are, there will always be events that can zap your confidence and darken your outlook. Although dealing with setbacks and overcoming them can be an especially tough slog, the key is to know that they are part of the process, and one should not be deterred when setbacks happen.


Western Factoid: I said dinner, above even though the meal was at noon, because in the west dinner is at noon, supper is at 6 and lunch is when you eat on the go or brown bag it.


Visitors, Packages, Letters and Texts

Taylor has been doing her thing; going to class by day and dancing and singing (in her bed) by night. Just like any 20 year old!

In between all the work and recreation she has gotten a steady and very welcome stream of communications from her friends and extended family. Each night she tries a new flavor of tea from a special tea selection sent to her by a friend. She also gets various items sent to her to help with her therapy, including media gift cards. She got a couple of really cool tee-shirts though we don’t know who sent them (apologies if you told us and we misplaced that piece of information.) There are also really nice letters that come most days. Each one is read to her as soon as she gets it.

Her phone buzzes occasionally and she is quick to ask if she has a new text message and if so loves to hear them including occasional messages with links to news stories her friends think Taylor might like. She responds with brief messages back mostly giving thanks.

In addition to the communications, Taylor is also visited by her extended family here in Denver and really appreciates spending time with her aunts Pansy and Tracy, uncle Hung and their families. We have found that the therapy gym at 6PM is a great place to let the visiting kids run wild during a visit.

These moments are the highlight of Taylor’s day and she is so happy to get them. Thank you all for your touching sentiments.

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.

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


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, 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 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.


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.


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.


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.


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.


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:


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.

Tentative Discharge Date From Craig

Today we had a “big” meeting to discuss Taylor’s rehab assessment. It included all the people on Taylor’s care team here at Craig Hospital. Nathan, Taylor’s brother, who is here to visit for the first time since Boston, was very impressed and noted that “there were nine professionals in the room who knew everything about Taylor.” Among the things discussed was that Taylor is hard to predict, as she keeps getting better so quickly. Another item from the meeting was her tentative discharge date of June 18th. This is not the date that her rehab will be complete, just the date that her help from Craig will be complete. After that, the plan is to be taken back to Los Angeles to participate in out-patient rehab.

After fun visits from an aunt, uncle, two cousins, and their families, Taylor settled down for some “bro time” where just she and Nathan chatted and caught up with each other’s news first-hand.