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.

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!

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.

To allow you to take a break from my father’s typos, I’m here to write a few posts here and there. In case you don’t know me, I’m Taylor’s younger brother, Nathan. I will be visiting my sister here at Craig until the 17th.

The defibrillator procedure now feels like the distant past. The only remnant of it is the temporarily limited left arm movement, and of course, the scar. It took a while to actually do the procedure, but now that it’s over, it’s great. We can leave the hospital to go on long walks or even drive around. Due to the generosity of my uncle Hung and aunt Erica who lent us their car, on Sunday we were able to drive to Downtown Denver and see the 16th street mall. We’ve also been walking around Englewood, the area surrounding Craig. Downtown Englewood is a very nice area with great places to eat. These past few days remind me of when Taylor and I used to hang out with our dad a lot and go to different restaurants and joke all the time.

Craig Hospital is a really wonderful place with great people, care, and support, but it’s time to leave. We are now a week away from discharge, and I think we’re all ready. Taylor has been here for a very long time and it shows by the way everyone knows her. Everybody here is sad to see her leave, but we are ready to come back to LA. This final week is the home stretch.

16th Street Mall in Downtown Denver

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.

New Room

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.

Punked

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.

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.