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!
Even though we do not usually respond to comments posted on Taylor’s website, we do actually read them to her. It is wonderful how many people John, Inge, and I talk to who say that they follow the website. This is great encouragement for Taylor.
Now that we are back in Los Angeles, several of Taylor’s childhood friends have come by to visit her. I let them close the door so that they can be with her alone and immediately the gossip, giggling and laughter start. I notice that after one of these visits, Taylor wants to try more things on her own, to push herself more. It is great that she is able to be with people her own age (otherwise, she spends the whole day with her old fogie parents – how fun can that be, right?). At the end of July, two of Taylor’s dorm friends from MIT will be visiting.
Thank you, dear friends, for keeping up with us, your words of encouragement and all of your support!
Taylor had her first outpatient rehab sessions at Ranchos Los Amigos today. We met her speech, occupational and physical therapists, the neuropsychologists and neurologist for the first time. It looks like Taylor will have another awesome team working with her!
Today was mostly establishing Taylor’s “baseline” values. In speech, her cognitive function was assessed; in occupational therapy, the range of motion and the strength in her arms were assessed; and in physical therapy, her walking, flexibility and strength in her legs were assessed. All of this work tired her out, and Taylor took a 3 hour nap after we got home! Going forward, she will have sessions 2 days a week and lots of homework. The goal now is to get her back to independent living.
At night, when we were talking about the events of the day, Taylor explained that she experienced a “moment of clarity” in the speech therapist’s office. Taylor says that what she “sees” is no longer like looking through a rainy window but is just blurry. While in the speech therapist’s office, amongst all this blurriness, she realized there was a calendar there that clearly said “June,” but then it went away. It’s like her brain is trying to interpret the images her eyes are taking in, and in that instant, the correct interpretation was made. What an amazing moment of clarity!
We have been home more than 2 full days now and are slowly settling in. It’s nice to see Taylor continue to become her old self again now that she is in the home setting. When we were unpacking her clothes that had been sent back from her dorm room in Boston, she enjoyed going through them and remembering what she had as I described them to her. She also expressed interest in going to a mall to get some skinny jeans, which had all been discarded in clearing out her dorm room after her accident. When we were at Craig, she usually didn’t care which pajama pants or T-shirt was chosen for her to wear.
She also asked if she could “watch” TV, which is another thing she never expressed interest in at Craig. Before her accident, Taylor was a big reality show fan. Since she’s been home, she has been enjoying listening to the reality shows and jokes that she should be allowed to watch them because watching TV is good exercise for her eyes.
It makes me happy that Taylor is still interested in things that she enjoyed, like clothes and reality TV, before her accident. To me, these are signs that she continues to recover her old self.
Well, after 11 weeks at Craig Hospital, Taylor was discharged yesterday. It certainly was a bittersweet day. Taylor made many gains while she was there. When she first arrived, she had a tracheostomy for breathing, a PEG tube for feeding, and a PIC line for medications. The most she could do was stick out her tongue for “yes,” and close her eyes for “no.” Now, she is tube and line free and can speak and have conversations. She can also sit, mostly unassisted, is getting better at standing every day, and helps her caregivers when they have to move her around. She is also learning how to walk again. With her awesome physical therapist, Taylor walked out of Craig yesterday (see video below)!
Yes, it was sad to say goodbye to the wonderful and caring staff (many of whom went out of their way to see Taylor and wish her well) because they have helped us so much. At the same time, it is wonderful to be home and be in familiar surroundings and to start the next leg of this journey.
The procedure that Taylor got for the implant is called a sub-pectoralis procedure. Normally, a defibrillator can be implanted subcutaneously, below the collar bone, but because of Taylor’s thin and small frame, the cardiologist recommended the sub-pectoralis procedure to prevent potential wear and tear of the overlying skin from a subcutaneous implant. Also, because of Taylor’s youth, he wanted to implant a device with a longer battery life (10-12 years vs. 5-6 years with some) to minimize the number of battery changes she would have to undergo throughout her life. A longer batter life meant having a larger device, which would have been better held in place under a muscle v. skin. With the sub-pectoralis implant, the surgeon makes an incision on the side of the chest near the armpit. A layer of the pectoral muscle is then lifted to make a pocket for the defibrillator to sit. The leads are threaded to the heart and the defibrillator is anchored to the muscle with sutures. As one can imagine, a sub-pectoralis implant makes for a more painful recovery compared to a sub-cutaneous implant, which lays just under the layer of the skin.
Friday, the day after the surgery was a rough day for Taylor. She was in pain and very uncomfortable. She ate only a few bites of food and felt nauseated for most of the day. The doctors and nurses did their best to make sure Taylor was comfortable with available medications. We even had to turn away some visitors that day because Taylor was so miserable. However, yesterday (Saturday) was a much better day. The pain was still there, but it was not as intense and tolerable. The cardiologist was able to remove the pressure dressing over the incision site; it looked good. The incision itself is about 2 inches in length. What is nice is that one cannot even tell there is even a small device under her muscle there. If one looks carefully, he/she may be able to detect a small, slight lump in the skin, compared to the other side, but other than that, it is not noticeable. Taylor was feeling so much better that we were able to get her into her wheelchair and take her outside to the nice gardens they have here at the University of Colorado Hospital. She also regained her appetite to make up for the last 2 days of hardly eating any food and ate heartily (pasta, salmon, fruit, corn, frozen yogurt, spinach salad). You can tell when Taylor is feeling better because her teasing and joking starts up again.
It was a busy day today. In the morning, Taylor had speech, physical, and occupational therapies. Shortly before noon, we put on her “life vest” and Taylor took a 30 minute ride to University of Colorado Hospital where she was admitted for her defibrillator procedure. After getting an I.V. placed in her arm (which took 3 different people before they could get it) and speaking with the cardiologist, surgeon, and anesthesiologist, Taylor was taken into surgery around 4pm. The procedure itself lasted about 2 hours, but Taylor was not taken back to her room until around 9pm because of the pre-op and post-op procedures. The doctor who performed the procedure said that everything went as planned and that there were no complications. When Taylor came back, she seemed a little groggy and rightfully complained of some pain at the site, but otherwise, seemed fine. She said she was hungry (she was not allowed to eat past 6am this morning) but did not eat more than a few bites of noodles before feeling nauseated. After that, I put on some soft music for her and she went right to sleep. We will be staying at University Hospital over the weekend and returning to Craig Hospital on Monday, when she will resume her rehabilitative therapy.
Yesterday and today, we received a Spring snowfall in Colorado! It was beautiful how the snow fell and clung to the trees, making everything white. The snow and cold-ish weather meant that Taylor could not go outside to the gardens and enjoy the sunshine, but now that she has her life vest (defibrilator vest), she has been able to go to the apartment to have meals with us (John and Kit). The meals away from the hospital have been really nice because it makes it feel less like a hospital stay and more like home and normal life.
Taylor’s physical and occupational therapists have also given us a number of exercises that Taylor is suppose to practice outside of her regular sessions. We do these exercises on a mat table (a large table with a gym mat top surface, which sits low to the ground) during off hours (weekends and after 6pm weekdays) in the Therapy Gym. Surprisingly, we have all enjoyed these sessions. Taylor likes being able to lie on a flat surface, roll around, and move her arms and legs wherever she wants, since she is usually confined to either her hospital bed or wheelchair. We enjoy spending this “playtime” with Taylor and bonding with her. We are getting to know and love Taylor on a whole new level. In return, Taylor, who prior to her accident was fiercely independent, has been very appreciative (see May 7 “Conscientious” post) of us being there/taking care of her and shows us with her affection.