Happy New Year

Happy New Year

Happy New Year to you all

My avid reader put in a complaint that I needed to update my blog.  So here it is.  There are only a few more blogs to go.  I leave the US on the 20th of February, arriving back in New Zealand on the 22nd.

Such a lot has happened since my last blog before Christmas!

Visits from Father Christmas, my oldest son James and his girlfriend Rochelle, my husband, children and father-in-law.  2 more infusions have gone by…

Where to start…


I was invited to the Bedford house for Christmas dinner (above).  Such an awesome family!  They love Christmas as much as I do.  Thank you for having me over to your lovely house Bedford Clan, wonderful memories to take home with me!  Love you guys!

My son James and his lovely girlfriend Rochelle came to visit.

It was fun spending time with them and showing them around where I have been living.  James is a sports nut so of course he enjoyed meeting Tim Tebow, well the statue of Tim Tebow!

This was taken outside Ben Hill Griffen Stadium, affectionately known as “The Swamp”.


Rochelle feeling Tim’s leg…

Everyone’s a fan!


Here we are in The Swamp.  Would love to see a game there one day!

Pretty cool for a college football stadium huh?


This is me in the piccy on the right doing “The Tebow”.  I can’t do it on the ground like he does, well I could, but then I wouldn’t be able to get up lol.

This family trip was given to us by some extremely kind people back in New Zealand.  I am going to write a thank you letter and send them some of these photos so they will know how much fun, and how many wonderful memories they have given to us.

How can you even thank people enough for all of the kindnesses that have been given to us over the last year…hundreds of people whom we don’t even know.  Pretty amazing!



What a great place!  So many things to see, and all so well put together…literally!  It took 2 years go construct all of this stuff.

The kids loved it.  They even got their driving licences.  Look out for them driving Lego cars around Masterton lol.



Disney is a great place for kids and adults alike.  It really does bring out the child in you 🙂

The boys had their hair cut there and Ben opted for the blue streaks, while Josh chose green and blue plus the fairy dust.  Looked cool too!

We had 3 full days at Disney.  Thank goodness I have Road Runner or I would never have been able to do even a half day!

Thank you Monique and Bill for all of the fun times!

NASA is a place that everyone would enjoy, even if you’re not really into space stuff!  I’m no space geek, although some might say i’m a space cadet, but I thoroughly enjoy the Kennedy Space Center. Here are Ben and Josh standing in front of the space shuttle Endeavour.  It was so awesome to see this right there in front of us.  This shuttle is going west for display, California if memory serves me right.  It is going to be carried by an airliner and stopping off in various destinations for people to see.A couple of days after our visit to the space centre, they were going to launch a sattellite into space.  Fortunately, the night was clear and the sattelite was launched and we could see it from Gainesville.  There was a bright flame in the air for a while, then all of a sudden it disappeared.  I felt very very fortunate to see that!

Tom and Jerry’s Airboat Tours

Of course a trip to Florida would not be complete without seeing some ‘gators out in the wild!

When I was a youngster I used to enjoy watching a program on TV called Gentle Ben (I know some of you will remember this!).  On this program they they used to cruise around the Florida Everglades in an airboat.  Since I first saw that program, I have wanted to do the same.  So, finally, I did it!  My husband, the 2 boys, Pops and myself went out on Lake Panasoffkee and did a tour of the headwaters of the Florida Everglades.

I can cross that off my bucket list.  Although I would love to do it again 🙂

More on Lake Panasoffkee here

Above; Josh on the airboat.

Right; Josh and his new friend Murphy.  This lizard looks very prickly, but was actually really soft and warm!


Pompe peeps

I’ve met a couple more Pompe peeps this year.  Kerri and Addy.  Addy is affectionately known as “Addytude” and I am “Allytude”.  We need matching t-shirts!

This is Addy on the left with her buddy Donald.

It was also my pleasure to meet Addy’s Mamaw (Grandma), and her Mum and Dad.  Addy’s Mamaw and I share a love of horses.  It was wonderful to meet such a lovely family 🙂

Here is the lovely Kerri, along with myself and the ever incredibly good looking and handsome Dr Barry Byrne (he does read this, right?)

Kerri has introduced me to the delights of the Waffle House.  Thank you Kerri, I wish you had done this at the beginning of my trip!  lol

Anyway, Dr Byrne doesn’t like us being called “lab rats” cos he said we don’t look like rats.  I agree!  So I’m thinking “lab hamsters” or “lab squirrels”…they’re cute!…see pic below for confirmation!

I want to have a little bit of a show off here 🙂
These are our new babies for this season.

Half Pints Hot n Spicey aka “Squirrel”

Half Pints Hot n Spicey aka “Squirrel”

Half Pints Pepe Le Pew aka “Pepe”

Anyway, enough of the fun and games and frivolity!! … Just kidding 🙂

But, on a more seriousererer note…

Facebook seems to be the vehicle for allowing us to form wonderful friendships among the Pompe community and many of us have met in person.  Only another person dealing with this disease can ever really “get it”.  So to have this online community and to be able to share our lives with them is a wonderful thing.  It not only helps the patients themselves, but also the families who are also going through the difficulties of what this disease heaps on us all day every day.

I LOVE YOU FACEBOOK!!!   mwa!!!!

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