MIT Friends

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.

Look, Ma! No hands!

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!

Walking Everywhere

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.

Home Care, Rocky Start

On Monday Taylor and I started her home care. It was a great day except that she fell over twice, missed lunch, missed seeing her friends, and was late for her first therapy appointment. Taylor was unhurt in the falls and a good sport while we adapted to the new routines. On the positive side we got rid of the wheelchair on the trip to her therapy sessions as she used the walker all day to go between class and to go to and from the car. We figured out that it works best if I do the steering while she does the walking. We also got some flash cards from a teacher supply store to help in relearning how to recognize letters.

On day two we made it to a restaurant for lunch to see a few friends (Emily and Danielle). We went to Sushi Stop which is a favorite of Taylor and her friends because it is hip, good, and most of all cheap. Afterward Taylor said “never again” since it is also really small and not at all accommodating for handicap access. We also did upper body stretching and exercises, voice exercises, and flash cards. Her voice exercises include trying to say a loud “ahhhhhh” for as long as possible to increase voice strength. Taylor is trying to reliably hit ten seconds.

On day Three we did floor exercises, voice exercises and flashcards in the morning. We then used the wheelchair to go to the Los Angeles County Museum of Art (LACMA). When we got there we got lunch at a food truck and found the museum closed! We visited the La Brea Tar Pits park and got a cold drink at a near by Starbucks. It was fun but also hot. Afterward we stopped by our friend Dalia’s Salon (Hairteam on Fairfax.) We were planning to just drop by and say hi but Dalia, Pia and Lily insisted on doing all kinds of work, free of charge, on Taylor which was needed since she has not been to a salon since January. They washed, conditioned and cut her hair, then did some work on her eye brows. Taylor came out looking fantastic. As a guy, one of the things I am learning about is how tough it is for women to take care of their looks. It is kind of a tragedy that Taylor has to rely on me to help with this, so it was wonderful for her to get real help in this department. Dalia, Pia, and Lily did a great job!

Appreciation for Friends

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!