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.
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.
Today was Taylor’s first day of therapy at the “Center for Neuro Skills”-CNS in Encino. It is a switch from the coaching/home therapy we were doing to an intense 6 hour a day, 5 days a week skilled care program. Her first day was not so tough, as Taylor has been working hard at home and was prepared to handle the workload. Her new therapist team seems great. Taylor chose to switch to this program herself to speed up her recovery.
Leaving Rancho Los Amigos was sad, as everyone there has been wonderful to us, and the therapists are top notch. On our last day (yesterday), Taylor did a lot of follow-up testing and evaluations, which showed remarkable improvement on almost every measure. We will miss the staff at Rancho greatly. Here is a picture of Taylor and two visiting friends from MIT, Kyra and Justine -when they were here back in July, at Rancho with the Rancho Chief Medical Officer Dr. Mindy Aisen, who is an MIT alum herself.
Taylor has funny fans. The neighbor of her (Dad’s) house in Venice is stand up comedian Lachlan Patterson. He has been doing stand up for years but recently made it to second place on the NBC show “Last Comic Standing.” He recorded a message for Taylor on YouTube. Check it out here: http://youtu.be/WGxpBfPgnv0
Of course, Taylor is also a big fan of Lach, and we have been watching his sets on the show week after week. It has been fun to see him progress in the show while Taylor has been progressing in her recovery.
In addition to Lach, one of Taylor’s biggest fans on this site, Mimi McCaffrey, is also a stand up comedian. It is great that Taylor has such talented supporters!
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.
Today Taylor was in a “Fashion Show” at her rehabilitation facility. The show included many patients and gave a chance for each to walk the runway all dressed up and to music they picked out. It was a lot of fun and I think Taylor enjoyed it. Here she is getting hair and makeup done before the show:
As luck would have it my camera didn’t work just as Taylor walked on stage. I did manage to get a picture of her just as she started to walk off stage. She looked so cute in her outfit:
Taylor’s vision continues to be perplexing. She can only get so far with two inch letters as several weeks of trying to get her to recognize them never got to 100%. She was always mixing up similar letters like “E” and “F” or “Q” and “O”. After switching to 12 point letters on plain white cards she was able to get to 100% recognition on the first try. She said it was because she could see the whole letter when they were smaller. Words can also be recognized when letters are placed on the table in front of her. The fascinating thing is the letters can’t be too close together. We did an experiment with 12 point letters on a computer screen. I typed a “T” and she recognized it. Then a few spaces over I typed an “O” (to spell “to”) and she said she could see the “O” but that the “T” disappeared. When I deleted the “O” she said the “T” reappeared. If I spaced the letters two inches apart she could see both but it seemed like she was looking in two different places for each letter. As if she could not see both letters in the same view. We are having fun trying to figure this out.
Taylor loves to get calls and or visits from friends. In the last few weeks she has had several long calls with friends she knew in Boston or Los Angeles. These interactions mean a lot to Taylor she appreciates it so much.
Most of us take for granted all that our brains enable us to do. Take walking, for example. To walk with ease (continuously putting one foot in front of the other and swinging our arms in rhythm with our feet) takes a lot of coordination. Add to that, paying attention to our path to make sure we’re not going to trip over uneven sidewalk, having a conversation with someone walking with us, and perhaps even holding a cup of coffee at the same time. You can start to see that something that we do every day takes a lot of coordinated effort that most of us don’t even think about. One can now appreciate how much coordination it takes to ride a bike or drive a car. These things most of us do without “thinking” about it.
That’s why when Taylor performs something new, no matter how inconsequential it may seem to the rest of us, we celebrate. We celebrate because it gets her that much closer to independent living. She has many small goals (like learning how to swim, ride a bike, eat with chopsticks again), but her big goal still is to go back to school. Recently, some things that Taylor has accomplished include riding on an escalator (with assistance) and being able to hold a spoon and spoon food out of a bowl and to her mouth. She continues to make little gains, and even though they are small, they continue to be steps in the right direction.
Two friends from MIT, Kyra and Justine, have been visiting Taylor this weekend. As neither one of them has been to LA before, Taylor has been going around with them for the LA experience. They have sunned in Venice Beach, walked the Hollywood Walk of Fame, visited the Getty Center, walked on Rodeo Drive, saw the Hollywood sign, shopped on Melrose Ave, toured Paramount Studios, took a scenic drive on Mulholland Drive, and ate gluten-free “Fronuts” among other things.
They were also able to attend one therapy session with Taylor at Rancho Los Amigos and meet the medical director there, who is an MIT alumnus.
It has been a joy for Taylor (and me) to have them visit.
One day, when I was working in the kitchen, Taylor just decided that she would get up from the couch where she was sitting and walk to the kitchen on her own. She still has not recovered her vision, so I was surprised that she could do this without running into things. She is still pretty unsteady on her feet by herself, but is trying more to walk on her own. When we go places, we will rarely take her wheelchair anymore unless we know that we will do A LOT of walking. Taylor still hasn’t built up enough stamina to walk more than ~1/2 mile, even with assistance, but she is getting there. Below is a video of Taylor walking for a short stretch by herself.
One thing that we are working on now is getting her to use her left arm more. She favors her right arm and having the ICD implanted near her left armpit didn’t help. She really took it seriously when the doctor said not to raise the left arm above 90 degrees for 6 weeks. However, 6 weeks passed last Thursday, so now it’s time to get that left arm back to work!
Taylor is starting to really change quickly these days. Around the house, she started to walk with the walker, then to and from the car, then everywhere. At therapy on Monday, it was decided that her walker just gets in the way since her legs are more coordinated than her arms, so we got rid of the walker and now just hold her hand as she walks. Yesterday, she met her friend Scarlet at a shoe store to buy a pair of slip on shoes (checkered Vans because they are easy to see.) We left the house with no wheelchair or walker and just walked around shopping and eating ice cream without all of the equipment (except Dad). Today, she said she had sore hips and shins, so we used the wheelchair a bit to give her legs a rest, but for sure her wheelchair days are numbered.
Her vision is getting better and she is learning to do more with it. We got her a set of alphabet flashcards. On the first go, she couldn’t recognize a single letter. After a week of going through the cards once or twice a day, she can now recognize 21 of 26 letters. Some of her techniques are fascinating. She can recognize “Z” and “N” because they are the only letters with pronounced diagonal lines. When shown a letter “S” she guessed “O”. I asked how she could confuse “S” for an “O” and she said she just sees a curve. It is really hard to understand what she “sees” and she can’t describe it when asked.
Her hands are becoming more coordinated as well. Today, she showed me that she could connect her thumb with each of her fingers on her right hand. This has been something we have been practicing from way back when she first gained consciousness and couldn’t control her hands at all. Her left arm is also starting to get used more as her implanted defibrillator (ICD) wound is now mostly healed, and she is less guarded about using that arm.
Similarly, her cognition is improving as well. When not working on physical exercises, we work on thinking exercises, such as naming items in a category or unscrambling jumbled sentences. Her performance in these tasks gets steadily better. I know this is happening because it is getting harder to make her laugh at my jokes. When she gets to the point of never cracking a smile, I will know she is totally recovered.