Joy Is Doing Just Fine

Dear Friends and Family:

My apologies for not posting for a while.  

All things considered, Joy is healthy and progressing.  She is happy and relaxed.  We regularly see little indications that her awareness is increasing and her physical abilities are improving.  As I have said, the pace will be slow toward some kind of self-sufficiency, but the timing is mostly beyond our control and we will never cease striving to help Joy improve the quality of her life. 

Visits to the physical and speech therapists at Scripps Encinitas are producing results.  Joy now understands the concept of therapy and is actively trying to improve the skills she will need to live a full life.  She is concentrating on the exercises they are teaching her and improving, although there are times when her concentration lags a bit.  Our speech therapist, Kelly, thinks that because of the atmosphere we have provided for Joy at home, her ability to achieve a significant recovery is enhanced.  By that she meant that many stroke victims are not provided with an active, challenging life and consequently spend much of their time sitting alone without stimulation.  We are lucky to still be able to provide Joy with full-time nursing.  The nurses constantly interact with her and challenge her to achieve the goals we have set for her.

I owe these nurses a lot.  Sue Thomas, Natalie Kinsley and Emelda Beltran are presently manning (womaning?) the shifts and are all excellent caregivers.  Before them we had help from Misty Kent, Angela Rudolph, Crystal Valdez and Teresa Demarco.  I wish to thank them all, and especially Sue Thomas who has been here from the beginning and tirelessly managed the whole affair.  Thanks, Sue!  Natalie also is a very fine and caring nurse, and Emelda works tirelessly on the night shift.  I thank them both.

We had one of those little episodes the other day that inspire us to carry on.  Joy was in speech therapy with Kelly and going through her swallowing exercises.  She still has a problem with pocketing liquids, a problem that originated with her stroke, but was compounded by the fact that most of her liquid intake was through her j-tube for nearly a year.  Kelly is dealing with the problem by feeding her liquids and sweet ices for much of the hour we spend with her twice a week.  She uses different kinds of drinks--milk, juice, water, to try and get Joy to identify and choose one she wants.  She uses a small laryngeal mirror to stimulate the back of Joy's throat when she decides not to swallow.

The other day she had Joy swallowing regularly and at one point asked Joy if she could open her mouth and say "AAHHHH."  Joy thought about this for a moment an attempted it.  We watched her struggle to open her mouth wide and make the sound for several seconds.  Finally she gave up and said, "I can't."  This was a revelation for us.  She had understood the command, tried hard to execute it and then spoke to us to tell us she couldn't.  There are usually several unique episodes like this every month.  Each of them reveals to us that she is progressing and re-invigorate us in our mission. 

Here's a picture of Kelly using the laryngeal mirror:

    Joy is also doing well in physical therapy with her therapist Rebecca, who concentrates on teaching Joy how to get in and out of bed safely, how to sit and rise from a chair, and how to use stairs.  It's amazing how complex a simple act like sitting in a chair is.  It involves perfect balance, peripheral vision, precise bending of the body at certain points, balance, hand coordination, and then strong muscle control.  Joy is getting better at it all the time, but has difficulty utilizing her right hand to assist in the process.  When ascending and descending stairs, she tends to grip the rail and neglect to slide it up (or down as the case may be) with her as she goes.  This indicates that her fear of falling is strong, but we want to develop her confidence to overcome the challenge.  It's helpful that the stairs at our house are less of a challenge than the ones at the hospital. They are narrower with handrails on both sides.  (I'm reminded that when I was designing our house, Joy asked why I wasn't designing a single-story house in the event we were still in it when we got old.  I told her that the site was so difficult we needed to build a two-story to get the floor space we needed and that we had lots of time before we would find stairs challenging.  Little did I know . . .)

Here are pictures of  Joy and Rebecca ascending and descending a long commercial stairway at the hospital:

Joy also made her first trip to the dentist in over a year last week.  Photo below.  I apologize for the haziness of the picture, but I'm using three cameras, my regular  Panasonic, our ipad, and my iphone.  I used the latter in our dentist Dr. Walker's office and didn't realize that the lens was dirty. I still haven't fully mastered the Panasonic and I've only started using the two others recently.  We've created instructional videos with the ipad in order to record procedures that the therapists use so that we might study them at home.  We recorded Kelly instructing us in swallowing exercises.  Also, Joy recently had to have her orthopedic boot re-inforced because she was finding her way out of it.  We recorded Jennifer, the sales technician, showing us how to fit and secure the boot properly on Joy.

Here's the hazy picture of Joy with Dr. Walker and hygienist Tiffany: 

 Joy had difficulty opening her mouth wide enough for the Doctor to examine her thoroughly and also couldn't tolerate the sonic cleaning procedure, but did have a good overall cleaning.  Doctor Walker said that what he saw looked good and that there was no sign of cavities.  We brush her teeth regularly and, in fact, sometimes take her in for an extra brushing when she pockets some food or drink.  (It's easier that way to get her to spit out what she's holding in her mouth.) Her teeth always looked very white to me, which was surprising because she was a moderate smoker, but she worked hard to keep them that way.  They still look just as white.

I'm building an entertainment center of sorts in the living room, where Joy spends her evenings watching the Hallmark and the Home and Garden channels.  I've got the boxes made of oak plywood installed and will build the cabinet doors of oak sometime in the next month.  Then the boxes get faced with oak around the doors.  The countertops will either be cut from a leftover piece of rose-colored marble given to us by Craig and Jackie Hill or some marble tile that matches the risers on the stairs to the second floor.  Here's a current photo of the work in progress:

I'm sometimes asked how I'm holding up and advised at the same time to make sure I take care of myself and do things I enjoy doing--to "take time for yourself."    I've never had a problem with that, and now that I'm apparently retired, I find I have the time to do some things I like to do and take care of Joy at the same time.  We are limited in our ability to travel right now, but I look forward to the day when we can travel together again and take some long overdue vacations.  In recent years Joy had been to Tahiti, China, and northern  Europe and Russia with her sister Susan, while we had traveled to St. Croix, Costa Rica, and Huatulco Oaxaca Mexico.  Joy loved traveling, and whenever the opportunity to do so avails itself we will come visit you all!

Okay, maybe not all of you, since I estimate there are at least a hundred of you who are following this blog, but as many of you as we can.  

Love from us to you all,

Joy and Doug