Monday, June 30, 2014

Ben- Stanford FUD Diet

This is the diet Ben will have to follow for awhile.....glad I'm just on Weight Watchers!

I spoke with Cathy this morning and she thinks there is improvement in Ben just since one full day of the antibiotics.  Maybe he has been at the start of fighting something.

In order to do the diet and journaling they are going to have to start when Cathy gets back home.  I think that is a good idea because Ben will be hating his dad if he is the one putting him on the diet!!!  Although they did start him on Almond Milk and he loved it!  But I think there is going to be a lot of resistance when they go full fledge on the diet.  

Sunday, June 29, 2014

Coming down to the wire!

I made a couple books with the deck layouts so we can make our way around until we memorize where everything is.

And, I forgot to show you what I bought from my friend Simone!  A pendant necklace - clear with irridescent foils which picks up color from whatever it is near.
 And, a pair of earrings of royal blue glass with a wonderful design!

And today, we went and had a pedicure!  We are ready now, for sure!

While we were driving to the pedicure to meet up with Jen and Rob, I was transcribing notes on the meeting with Doctor F. at Stanford Children's Hospital while Cathy was re-living it.  It was such a comprehensive meeting...a lot to think about and a lot of hope and a lot of thankfulness for doctors devoting their time to finding a cure for PANDAS.

Saturday, June 28, 2014

PANDAS / PANS and our adventure

For some years now my dear grandson has been dealing with a syndrome called PANDAS or a later name, PANS.  The first symptoms started as totally zoning out and almost trance like.  At school he start being by himself in this state.  Then the pacing was added.  The teacher couldn't get him to stay in his seat.

That all led to my daughter taking him out of school and home schooling him.  Teaching him anything was very difficult because he would zone or pace or literally "bouncing off walls".  He was seen by a psychiatrist and psychologist all kinds of tests were done and he was put on meds for anxiety.  OCD set in and eventually, full blown raging.  The doctors had barely heard the symptom PANDAS, let alone understood what it entailed.  The school district was not cooperative at the time either, to say the least.  The whole thing was extremely difficult for the family, especially my daughter, who had to live so close to it all every day.

It turned out one of the meds caused the raging and that was stopped.  The doctors never did come up with anything that really helped toward a solution.  He has been falling behind further and further because of lost time while zoning.

Zooming forward, we heard of a study that a couple doctors at Stanford Children's Hospital were working on.  Luckily, they were just starting it.  Ben was referred to one of the doctors for an interview.  He met with the doctor and was accepted into the study.

The timing wasn't so good because one of the doctors had just gone out on maternity leave and they were so backed up.  Ben was on the waiting list to see the doctors which brings us up to this present time.  Since the doctor interview, Ben was able to attend a special school in a nearby school district.  Since the meds had been changed he didn't have a rage situation although there were times when it was rough going.

Friday, Ben was asked to meet with the Rheumatologist (the one that had been on maternity leave).  At this point it has been hard to see how Ben would be able to overcome all he time he has lost.  He still has the zoning out, some pacing, OCD issues and the like.  The doctor was so good with him and she is wanting to try all sorts of paths to get a "cure" for Ben.

By the way, by now, PANDAS/PANS is much more well known.  Actually it is looking like an epidemic, how many effected it is not yet known.  I think personally, that there are many children that are considered "problem children" that actually may have PANDAS.  Parents out there are desperate and are grasping for straws of hope.

So, back to Ben.  The doctor said that Ben totally fits the symptoms that the other 70 kids in this study have.  They are like detectives looking for patterns and trying to find out just what this is.   So, she has listed all kinds of things they are going to do.

For those of you that have been following my adventures, you know we are in the midst of cruise fever!  One of the main reasons I planned this cruise is because my daughter needs a break and total relaxation from everything for a bit to regroup.  Because of all her obligations it is hard for her to get away but we are depending on her husband to do dual duty for the 8 days we will be gone.  The timing isn't the greatest as far as Ben starting all these new things this week and Cathy being gone starting this Friday.  But she will be on the starting block when she gets back!  Kudos to George, by the way!!

So, these are the starting steps:
1.  Ben will be starting the antibiotics tonight, 2 pills every morning, 2 pills every night.  The rational for this is that each time these kids go through a bout of infection it puts them back and they seem like they may not be able to recover everything.  The doctor was encouraged that Ben does have times were he pops out with total lucid moments, with memories of things that we thought he had totally lost. She said that could point to hope that these kids could actually regain some of what looked gone.

2. Diet - George is going to research just what Ben can have on the Stanford FUD Diet.  Then he will start the diet.  The rational for this is that it seems there may be a connection with carbohydrates in these kids that makes bacteria bloom in the gut.  The body has to fight that bacteria while it is fighting the virus that may be causing the PANDAS.  Thus the body is fighting 2 fronts.  An evaluation of each week will be done and compare any changes, if any.

3.  Meanwhile, they will be journaling everything.  We may loose a week on this while Cathy is on the cruise but she is such a great journal-er already I am sure it will be ok.

4.  Cathy has a whole list of phone calls and scheduling to do before we leave.  She is going to be busy.  Ben has blood work to be redone, like on lime disease, MRIs to schedule, etc.

After the diet and journaling for several weeks, then the IVIG routine will be started.

Here we glad, at last, actions are being taken!!

As always, I use this blog as my journal.  Hopefully I will be able to document steps forward in Ben's recovery!!

Window Suite Perks

A window suite on the Golden Princess has suite perks!

Sofa bed
Separate sitting area and coffee table
Complimentary mini-bar
CD/DVD player with access to a complimentary DVD library
Luxury pillow-top mattresses
Luxury 100% Egyptian cotton, high thread count bed linens
Pillow menu
Luxury towels and bathrobes
Fresh flower arrangement
Upgraded bathroom amenities, including bath salts and soothing gel eye mask.
Roomy walk-in closet
Priority embarkation and disembarkation at tender ports
Private lounge at the conclusion of the cruise
Priority onboard Shore Excursion reservations
Complimentary laundry and professional cleaning and shoe polishing services
Private portrait sitting with onboard photographer
Dedicated priority line at the Passenger Services Desk
Use of the Lotus Spa Thermal Suite
Priority reservations for the Chef's Table, the Ultimate Ship Tour,
     and the Princess Cayz Bungalows
Exclusive Suite Breakfast served in Sabatini's (a fancy on-board specialty restaurant) with a
     complimentary "Good Morning Mimosa" each morning
Exclusive Elite Lounge with complimentary hors d'oeuvres
Extended room service menu with full breakfast, lunch and dinner offerings
Preferred "Traditional" or "Anytime Dining" reservations
Nightly delivery of deluxe canapes (upon request)
Complimentary cover charge for one of the specialty restaurants on embarkation evening
Chef's "Welcome Goodies" on embarkation day
Complimentary flower corsage and boutonniere for your first formal night
Enhanced turndown service with 6 decadent chocolate dipped strawberries or wrapped chocolates      presented on a silver tray (of course I am eating the chocolate dipped strawberries.....It's FRUIT!  Zero Weight Watcher points!

Tomorrow I will show you more of the room layout.

Thursday, June 26, 2014

Our Window Suite

A window suite is a suite without a balcony.  It has suite perks (I will post them tomorrow).  Since we are not heading to Hawaii and will not be in a hot weather location, I think we are going to love the window suite!

These are some pictures of our suite taken by a couple that loved their unexpected upgrade to room F305!
 We get a lovely floral arrangement to welcome us on board...and champagne!

 There is a nice large living area.  The couch makes into a bed.

 Nice appointments and lots of storage.  Notice the luggage is delivered to the mat on the bed to keep the bedspread clean. After everything is put away, the suitcases are then stored under the bed.

 The window suite bathrooms are much larger than most rooms on a ship, especially the dual sinks and the large shower.
We also will have a refrigerator.

And we will be requesting fresh fruit to be delivered to our room......that will help us avoid some of the high caloric food outside our door!

Wednesday, June 25, 2014

When we first take off on our cruise....

We are going to enjoy watching the Pudget Sound go by!  And we are going to look for my sister's house...well, it used to be hers til last year when they moved to Arizona.  This is what it looks like looking out at the ships from her house:

Most fun are watching the cruise ships in the evening with all their lights on in the dusk.  And then there are the submarines!  They are really neat.

Monday, June 23, 2014

12 Days Till We Sail!

In the last couple of weeks there has been a volcano in Alaska erupt and today there was an 8.0 earthquake in the Alutian Islands off about 140 mile from Alaska mainland.  I guess Alaska is getting nervous about the princesses about to head their direction!

Sunday, June 22, 2014

Garden and Art People!

Today is the last day of the Art in the Garden at Reagan's Nursery in Fremont, CA  It was really hopping there yesterday morning when I was helping out.  The flowers are gorgeous and the art is worth collecting!

This afternoon when I go over again I will try to remember to take my camera and post some pictures...but then it will be too late for those of you that don't get over there today!

Friday, June 20, 2014

Friday Night at the Museum!

Tonight is the "Behind the Scenes" tour of Ardenwood.  That means we will be showing off areas of the house that are normally off-limits to our guests.  This will include the 1857 hallway and the 1857 attic and the 1889 attic.  There are little treasures up in the attics, too!

It is not to late to just show up.  There will be some yummy food for sale also.

Thursday, June 19, 2014

The Missing Deck

I remember hearing that hotels skip the 13th floor because it is supposed to be bad luck, but I had no idea that Ships did it too!

So, I was wrong yesterday.  The Golden Princess has only 16 floors (or decks) because they skip the 13th!  Wow, I thought that was old fashioned and no longer done.

We have 16 day before sailing but 15 days before leaving!  Poor George, Robert and Dear Hubby, they are staying home.

Wednesday, June 18, 2014

17 days till sailing!

The ship is 17 stories high.  The first 4 floors are not open for passengers; the employees live there and the workings of the ship are also down there.  There are about 4 floor that are nothing but rooms for passengers so it looks like a hotel corridor.  Then there are all the other floor that have all kinds of restaurants, entertainment of all kinds to keep the passengers happy!

Today I made a little book of the floorplans of all the decks so I will know where everything is.  

Tuesday, June 17, 2014

Something for the Cruise

I bought a Paperwhite Kindle with a thought toward the cruise.  Withe the Paperwhite you can read without a light on.  With my old Kindle you cannot.

You can see the difference in the daylight in this photo:

 Of course, Missy has to figure out what I am doing.

 Actually, she wants to get up around my neck.  She is rather demanding.

Sunday, June 15, 2014

Bustle Dress for the Attic Tours!

I am going to wear my 1870 Bustle Dress for the "Night at the Museum" attic tours.  Though it will be right in the middle of the 1857 attic and the 1889 "Queen Ann" attic.  It is fun to wear.

I have yet to add a bunch of frou frou on it.  I was going to add a pleated border, etc.  but have been too busy for that.

Friday, June 13, 2014

Attic Tours!

We have never been allowed to take guests to Ardenwood up to the has only one way in/out.  But somehow that rule has been given a rest for an evening.

We will be leading tours through the back hall, not currently on the tours.  The changes in the original 1857 walls will be pointed out.  And then we will go up to the attic, both the 1857 attic and the "Queen Ann" attic.  There are some treasures up there, as well as some interesting architecture.  Find out what the turret looks like from the attic!

Tuesday, June 10, 2014

Lucy's Next Adventures!

Today, I found out that the man that bought my Lucy bought her for a lady that is going to travel all over with her show dog to dog shows all over the US.

He and his workers checked Lucy out - everything working, buffed her up, changed her electric power cord, tweaked the generator and she was as good as new.

Off she goes, with new friends on new adventures.

Monday, June 9, 2014

Goodby, Lucy!

Yesterday I sold Miss Lucy, the RV.

She was a great vehicle and did all I could ask of her in taking us all the way across country on our Slice of America 2 trip.  She is going off to other adventures and so am I.  Goodby, Lucy.  I will especially miss you on stormy nights when I used to spend the night in you listening to the rain on the roof.

Our adventures on our trip are recorded on our blog:

Sunday, June 8, 2014

Double duty weekend!

With all the weddings, graduations and vacations it was hard to get enough docents to cover Ardenwood tours for this weekend.  So, yesterday afternoon I was there.  The weather was sooooo perfect!  It was absolutely beautiful.  Lots of families with small children and bird watchers with telescopes were enjoying the park.  And, today I will be there also.   It looks like we are going to have a repeat performance on the weather too!

How is this for an evening at sea!  Although I will enjoy later just to lay and look up at the stars.  That should be a real sight!

Saturday, June 7, 2014

Aunt Edna is coming with us!

My Dear Aunt Edna loved travel.  She had traveled from the time she was in college (~1936) till her last trip in 1990.  Among her travels she went around the world and especially loved Africa and Alaska.  She was so interested in photography and took pictures on all of her trips.  She made friends where ever she went and had tons of letter from people she had met.

After she married Cal, her 2nd husband on New Years Day, 1989, they had gone on a cruise to Panama and enjoyed going through the Panama Canal.  They had so much fun on that cruise, but by the time the cruise ended Cal realized his cancer in remission had returned.  Till the end of October of that year, they went through the pain of all what goes along with treatments, hospice and Cal's death.

They had planned to go on many cruises and travels.  The next one was to be to Fiji, Austrailia and New Zealand in Spring of 1990.  Aunt Edna decided to go on that tour and she asked me to go with her since Cal was gone.  It was a great trip and she did so well.  It was her last real trip, although Cathy, Luke and I did fly her down to LA to reminice her 1940's years.

About 1991, she started to have tiny strokes (TIAs).  They didn't seem to cause any problems but they were a worry to her.  She also started feeling that things were just not right.  Eventually she was really concerned things were changing for her.  When she got lost in her own town when coming back from a long drive to visit her son, she knew something was wrong.  That incident convinced her she needed to give up her car.  A big step of giving up some independence.  But wise because dementia/Alzhimers symptoms were starting to emerge.

As years went by she starting loosing memory.  She had told me that she took all those photos on her trips so that when she couldn't travel any more she could just enjoy the photos like she was on the trip. But then came the time when she could not remember the trips even when she saw the photos.

So, we are taking Aunt Edna with us on our cruise.  She would have loved it!

We have a few little things in her memory planned.  Jen made the beautiful door hanging (above) for our room on the cruise.  I am bringing several of her scarves with us and we will incorporate something around them.  Anyhow, her spirit will certainly be with us!

Friday, June 6, 2014

Losing or Gaining Weight on a Cruise

Just why do you think everyone at my Weight Watchers group laughed this morning when I said I would like to loose weight on our cruise........?

I think it is going to be a test of my will power.  I hope I am strong enough!

I plan on doing stairs instead of elevators.
I hope to explore all the floors of the ship - to get in exercise.
The Promenade Deck is going to be my friend.
I have already added to my cruise personalizer that I want lowfat /low sugar /low sodium food.
  (hopefully our personal waiter will help me with this.)
I am going to focus on veggie and fruit dishes.
I am going to focus on fish ....most of the time.  Fish is not my favorite usually
I will order sauces and dressings on the side.  I plan to use the "dip the fork" for these items.
I am not going to be afraid to leave food on the plate.
If I plan on a special high calorie meal, I will take it into account at the other meals.
I do plan on high tea on the ship and plan not to have the afternoon cookies except a couple of times.
    (the cookies are going to be hard to pass up.  But if I have one, it will only be one.)
I plan on fruit for snacks.
We have planned on early seating for dinner so we shouldn't be ravenous by dinner.
I have to remember to drink lots of water.
Thank God I am not drawn to alcohol drinks or sodas....High calories!
I plan on drinking plain coffees to avoid extra calories in specialty coffees.
I am hoping that we will feel sooo relaxed we will eat slowly and recognize when we are full.
I plan not to eat meals at times I don't need.
If I splurge I plan not to chuck the whole eat healthy plan and start anew!
When I taste a desert I plan to eat just a taste.
I plan to divide my meal in half if they bring to large of a portion.
I plan on being able to turn down unhealthy suggestions from the wait person.
     I have heard they have a tendency to suggestion very decadent deserts.
I plan to remember to have healthy soups if they look filling and low cal/low sodium.
Breakfast is a weakness of mine.  I plan to order low cal breakfast, although thinking of it at this moment, I think this is going to be difficult.
I am bringing my fitbit with me so I plan to make my 10,000 steps a day.
I hope to use the gym, but frankly, I haven't seen inviting photos of it on the Golden Princess.
     It didn't look like it has windows.
We plan to have fruit in the room.
We are supposed to have chocolates on our pillows before bed......I might have to maybe taste and then flush the rest down the toilet.......unless our butler brings us strawberries dipped in chocolate...I will eat those healthy snacks!!

Well, I have been thinking and planning so hope I have it covered.

Thursday, June 5, 2014

A Real Princess Cruise

There will be 3 Princesses joining the Golden Princess on July 5th in Seattle!

The Royal Jewels

Tuesday, June 3, 2014

31 Days till we have our cruise adventure!

This will be such a different adventure than I have ever been on, and it will be so much fun with my two dear daughters!  I have been packed for so long I am going to have to go through it all and make sure I really need it all.  But this is like a winter/summer vacation.  One time I went to Seattle it was over 100 degrees.....I certainly didn't plan for that!  I wore layers and was really warm.  The bottom layers were for Seattle weather! not for that kind of heat!.

Then we will be going into Glacier Bay, supposed to be the coldest spot on the trip.  It can be really cold with a breeze and possible rain to about 60 degrees.  Since we have to be prepared for every thing I have clothes for warm and for cold and in between.  Then all the stuff we need (like camping).  Buying stuff on the ship is supposed to be very expensive, so that means lugging everything you think you might need.