Back in Boston we got a big favor that has never been acknowledged. We were in the Cardiac Intensive Care Unit (ICU) and were about to be transferred to a general purpose floor for continued recovery. This was bad news to us because we had been telling the staff for the last two weeks that we need to be in the Neurology department because Taylor’s challenges at that time were all about her neurology. The excuse we kept hearing was that there was no room in Neurology. This was frustrating because when we asked questions we were told that “this is a neurology question” and that as members of the cardiac team they couldn’t help us. The idea of being transferred to a general purpose floor was worrying us.
Around this time Dr. Robert Langer, James Dahlman, and a few members of Taylor’s lab came to visit. “Bob” Langer is the Principal Investigator (PI) of Taylor’s lab and James is her lab supervisor. They asked if there was anything they could do to help and I mentioned the situation about getting to the neurology floor and that we were frustrated. They mentioned that they would try to see what they could do and left. About 20 minutes later, The nurse came in and told us we would be moving to the neurology floor. Later I got a call from James who asked me if we got transferred to the neurology floor.
Unlike all the super smart people at MIT, I am a bit slow on the uptake, it happened so soon after they left that I didn’t immediately make the connection. Though we will never know for sure, looking back now I am pretty sure Bob, who is a giant in academic research, intervened on Taylor’s behalf and contacted who he could to help Taylor get the care she needed. Time after time we have seen how the MIT community looks after their own. We are grateful to count them among the many angels, near and far, who have helped smooth the road to Taylor’s recovery. Thank you Bob and James.
Taylor got to spend some time with her bud, Leilah, who she has known since third grade. Also, her brother Nathan and his girlfriend Arielle were here visiting so Taylor finally got to spend some time with people her own age. Here are some pictures:
Gnomes made by Taylor and Leilah in Therapeutic Recreation
Leilah, Nathan, Arielle and Taylor in the new family suite room
Taylor and Leilah sitting on the couch. This was the first time Taylor was not in a hospital bed or her wheelchair since first entering the hospital. She managed great but occasionally she would say “I’m falling” and would need to be put upright again.
Taylor got a new room at Craig. It is called a Family Suite and includes a section with a hospital bed that looks like a typical hospital room. Further into the room is another section that includes a kitchenette, a small dining table and a pull out sleeper couch. This room helps her family learn the ins and outs of caring for her once she goes home. You can see it in the pictures above.
Out for a Stroll
Taylor is now approved for all kinds of activities outside the hospital now that her defibrillator is implanted. We found a lovely path where we walked along a flowing creek, watched a bit of a high school baseball game, and then put Taylor on the grass for a few moments.
Taylor loves to pull pranks and uses them to keep things fun. She wanted me to include one of them here.
Knowing that Nathan and Arielle were coming to see her, Taylor got an idea to use a novelty toy she has to make some fun. She has a toy brain made out of soft foam. When you squeeze the brain it makes a flatulent sound. Her idea was to put the toy under her mid section and when Nathan and Arielle show up she could wiggle a bit and make the toy sound off. She did this to great effect for about two or three minutes. It went like this “PTHFEET! I’m sorry… PHFETHEFET! Sorry, I am taking medicine that makes me have gas… PFTTTTPH, oh, I’m so sorry.” Eventually Taylor’s mom pulled out the toy and let Arielle and Nathan know they were punked. Taylor’s fun attitude keeps everyone laughing.
Today Taylor got her feeding tube removed which makes her tube free for the first time since the day this journey started. Yippee! To round out the day Taylor and I finished some basic training for car transportation and wheelchair handling. These events are preparation for when Taylor is discharged from the hospital and moves back home to complete her rehabilitation.
Taylor also has a lots of extra care givers to help her around for the next few days. This includes her brother, his friend Arielle, Taylor’s friend Leilah, Taylor’s Mom, and me. Taylor is enjoying the company and the build up to being discharged. Just a few more weeks to go.
Taylor’s vision is developing but in perplexing ways. She describes her vision as “looking through a window in the rain” in that the image is constantly moving and distorting as rain drops keep falling on the glass. She also describes her images as cracked so that if we ask her to look at a flagpole or line on the wall, she describes it as cracked or broken up in a few places.
Lines and Letters
When looking at a series of letters, she only sees part of them. For instance, when I show her a letter “P” she says she can see a curve but not a straight line. I asked her, “How can you see the curve but not the line?” She answered, “If I could see the whole thing, you wouldn’t be asking me these questions.” When I show her a letter “A” or “V” she knows it is one of these letters because she sees the triangle in each but cannot tell them apart, despite the fact that the triangle outline of each is inverted. When she sees a letter “E” she sees horizontal lines but no vertical line. When looking at a letter “H,” she sees vertical lines but no horizontal line. When looking at a computer screen in a dark room, when a line is shown, she can identify if it is strait or curved. If it is strait, she can identify if it is horizontal or vertical. If she is shown two lines she will report seeing three or four.
Taylor has always been able to detect colors. Using 8″x11″ pieces of colored paper, she can identify the color at up to 100 yards away and probably farther (we ran out of space). However, when walking back to where Taylor was from 100 yards away, she couldn’t identify me as a walking person until I was 20 feet away.
Every now and then Taylor will surprise us by recognizing something that clearly takes better vision skills than she normally exhibits. For instance, she recognized that I needed a hair cut. This was true but not “that” true, so she must have caught a glimpse of something. This happens from time to time out of the blue. When it does, it is a pleasant surprise.
Taylor is planning to go to University of Colorado Hospital tomorrow to have a device implanted in her chest to help her heart stay out of trouble. She will be recovering throughout the weekend then back at Craig on Monday to continue her therapy classes.
She continues to do well in her classes and we are also spending more time outside of therapy practicing basic life skills. This includes getting dressed, putting her feet on the floor to shift from her bed to her wheelchair (instead of using the lift,) brushing her teeth, washing her face and all the other daily tasks of life.
Everything is therapy and the limiting factor is time. For instance, if we only have one hour to eat lunch, she can only practice eating for so long before we run out of time. Do we have enough time to let her practice getting dressed or washing her face? If not, then we do more of these things for her. If there is time, then we let her go to town on each task. It makes for a full day, each day. To give her some free time, we ease off all this practice in the evenings so she can chat with visitors or just spend some time listening to books. Right not Taylor is enjoying listening to “Watership Down.”
Taylor reminds me of her grandfather, my dad, who always had a great time being funny when he was in the hospital or severely ill.
When I told her about the video of her walking she asked me to play it for her. When I did she commented that instead of the soft piano music we used for the background music, we should have used the theme from Rocky.
She also pointed out that she does like to “box” with me. Her version of boxing is put on her mean face, to make fists, and flail her arms about saying “pow pow.” I said once that she looks very cute when she does this. She responded that she does NOT look cute, she looks “MENACING!”
All of this is great fun and the result of Taylor having a great attitude. Considering the hand she has to play it continues to amaze me how she manages to have so much fun. I can literally count on one hand the number of times she has really been down.
Taylor is having a lot of fun with her therapy sessions. She is kind of a favorite because she is so small and can be so easily moved (some patients are 300 pounds), and because she is so fun to be around. Here she is with an extra arm provided by her physical therapist:
Taylor is also enjoying time with her Aunts on her mother’s side. Today she was in the family apartment, located on the hospital campus, catching up on family lore with aunt Betty who is visiting from Minnesota, while her Aunt Pansy, local to Denver, is cooking a healthy high magnesium meal. During the meal Taylor was having trouble keeping her food in her mouth because Pansy’s stories about funny family events kept her bursting out laughing. The support from the Lew family continues to be stellar.
Later, just before bed, she got a few letters from well wishers that were great fun for her when we read them. Thanks for all the love everyone brings to this process.
A research paper headed up by James Dahlman, Taylor’s lab supervisor at MIT, was recently published in Nature Nano. Taylor is one of the many authors on the paper. This makes her a published researcher and I am very proud of her. After talking about it with a physician here, who was amazed, it apparently is a real accomplishment and even more so considering she is just a sophomore. Here is a link to the paper:
Mentioning this here is bitter sweet because it brings me back to when I first learned this news. It was around the second or third week after the cardiac arrest. James came into the hospital to check on Taylor and told me he just learned that the paper was going to be published. It was a real mix of emotions. On the one hand I was happy and proud of Taylor. On the other I wondered “is this the last time I get to feel this way about Taylor?”
Luckily it was not. I feel this way about Taylor, and my son Nathan, nearly every day. Thank you all for your prayers, positivity and kindness. Thinking of the journey from when I first heard this news to now seeing it published, makes me know that those three things can make anything happen!
Congratulations to James and all the authors who worked on the paper.
Taylor has the most incredibly cute way of talking. It isn’t anything like the way she used to speak. It is kind of childlike and usually brief. The words flow out of her slowly and are drawn out. Because the physical act of speaking is labored she has a lot of one and two word answers. “Okay”, “yum”, “cool”, “later”, “a little” are some examples. She can also converse in full sentences when necessary but usually finds a way to express her thoughts more succinctly.
Because her speech is so cute sounding, she is so small, and she has such a playful fun attitude, it’s easy to fall into thinking about Taylor like a child. I see therapists doing this and Taylor is content to let them, however; occasionally Taylor shows her scholarly side when she has to comment on something technical. When she starts talking about the research she did at MIT it is a really weird because she sounds like a four year old discussing the finer points of nano-particles.
While her speech may be relearning how to sound like her old self, her intellect is already fully there. This weekend she and I listened to “And Then There Were None” by Agatha Christie. Taylor amazed me by figuring out much of the plot by the end of the second chapter. She even postulated the “who done it” correctly but dismissed it as not likely due to impossible curves thrown by the author.
It will be wonderful when Taylor is fully recovered but while this is happening it is a joy to be around this cute/smart beautiful person.
A few days ago in physical therapy, Taylor’s PTs stood her up. Afterwards, her PT said, “What do you want to do next?” and Taylor said, “Bring on the walker!” She has said this before, as she is adamant about getting back on her feet, but each time prior, Taylor was told that she was not ready. However, on that day, they decided to give it a try, and Taylor walked using the assistance of a special walking machine and her PT. This was on my birthday, and it was the best present ever!
If anyone is having trouble seeing the video please let me know. This is a first attempt to add video to this website, and I want to make sure everyone can see it. (A big “thank you” goes to Kit’s cousin, Pansy, for shooting this particular video with her phone). Hopefully, there should be more videos of Taylor to come.
In addition to walking, she and I play catch with a ball now. Every day she is doing more and more, and it is exciting to see her develop each day.
Magnesium Update: Her levels are still low, and we are working with different types of pills that are easier to keep down. Yesterday, she was able to keep down two slow-acting magnesium tablets without feeling queasy by taking them with meals and just before going to sleep.