This is my last blog from this side of the Equator.
Update on our fundraising for Benjamin Revell;
We raised $520 for Benjamin and Malia’s daughter. And, it is with great joy I can say that “Luisa Rose Revell” was born this week :) Congratulations to the new parents. Exciting times!
Sophia has gone back to the shelter, but she is to be adopted by friends of mine in Wisconsin. I’m so happy about that! I know that Sophia will have a wonderful home with Debbie and Cliff. I met this lovely couple when I went to San Antonio for the Pompe conference last year. I think Sophia will be perfect for them! Don't foget to send piccies to Aunty Allyson :)
This week I had my final infusion in Florida. What a sad time it was to say goodbye to the wonderful people who have taken such good care of me during my time here. We had a pizza party in my room while I was having my last infusion. They bought me a lovely cake with a gator on it, and some lovely gifts to take back to NZ with me, including a breeding pair of squirrels. Now I just have to work out how to sneak those through customs… maybe one down each…hmmm nah…
George brought along some wine which Russ hooked into. George wrapped the wine himself in a classy brown paper bag! Apparently it's also classy to drink it from the bottle while it is still in the paper bag. Thanks for the heads up George, I'll give that a crack! Notice the name of the wine? *sniggers* Thank you George, that's going back to NZ with me! I've also got some Cheer Wine to take home. No it's not an alcoholic beverage!
I’m really going to miss “all ya’all”! Did I say that right Betsy?? The girls have been trying to give me lessons on how to speak with a southern accent. I don’t think I ever really got the hang of it! I have made so many good friends here. I really never expected that to happen at all. I guess I don’t really know what my expectations were, if any. I was excited to be accepted to come over for the trial, and that was pretty much all I had in mind. To have met so many people who were so good to me, was the icing on the cake. I have enjoyed my time here immensely. To say the American people are awesome is an understatement. Kind, warm, caring, polite, fun and truly giving are just some of the things that come to mind. Thank you all, thank you. I really hope we meet again.
Tomorrow (Sunday Florida time) I leave Gainesville and head to Orlando with Katie. I have an early morning flight Monday to LA so it’s easier to stay in a hotel at the airport. I fly out to LA and get to spend the day there with those crazy California girls before I ship out to NZ later in the evening. Then I have a 13 hour flight to Auckland where my son James and his girlfriend Rochelle will meet me for breakfast. Following that I hop a flight to Palmerston North, where Steve and the boys and Pops will pick me up and take me home.
I’ll do another blog from NZ. Thank you to my avid reader for reading this!
See you on the other side...
Fundraising for Benjamin Revell
I’ve put an auction up on my Face Book page for a service to each of my miniature stallions. Another 3 friends have also offered the same. Isn’t it wonderful how people come together at a time of need? We hear so many negatives in the news and various other outlets. I’ve often thought it would be great to have a “Good News” channel on TV where you could see wonderful things, rather than the horrible things we are subjected to on a daily basis. Anyone wanting to bid on these boys please do. It’s for a great cause!
Gentle Carousel Therapy Horses
Thinking about wonderful things... I have to share with you one of my favourite web sites. Not only because it is MEGA CUTE, but because it is an absolutely wonderful display of beautiful people, working with beautiful animals, to help those in special need.
And if you need extra cuteness overload, check out Baxter the cat!
Baxter works with the horses at Gentle Carousel's Reading Is Magic literacy program.
He shops at “Build-A-Bear” for his snazzy outfits. One person on facebook said, when looking at Baxter’s photo in his fur ensemble, “He looks like my Great Nan”! LOL
Actually if he was wearing pearls and red lipstick he would look just like my Nana too!
I think I need to make a trip to “Build-A-Bear” before I go home. We have 4 cats… :)
Which leads me to Sophia. She is still with me, but going back to the shelter on Wednesday.
I'm trying to get her to Wisconsin. Is there anyone reading this who is heading to Wisconsin from Florida soon?? Some friends up there are keen to take her.
It would be fabulous to know she’s gone to someone whom I know. She’s a really awesome cat.
Next week is my final Florida infusion. I have 3 days where I have to be at the hospital for testing. There are 2 walk tests this week! The one I am most keen on doing is my breathing test. I had increased my lung function by 5% at my last test. That might not sound much right? But if you think about it for a minute…I have a progressive illness, my lung function was decreasing at a rapid rate before I got here. And now, not only has it stopped decreasing, not only has it stabilised, it has actually improved. 5%, it’s absolutely tremendous!
On my way home I will be laying over in LA for the day. I’m meeting up with some friends whom I met in San Antonio, Sabrina and Alicia. I’m a little worried those girls will lead me astray. They’re wild! And me being so quiet and all, well, let me just reiterate, I’m a little worried. I hope I make my flight back to NZ!
I have my hotel and flights booked for Australia. Someone asked me the other day if anyone was going with me for support…I thought that was kind of funny actually. I said I’m in the US by myself lol. Ozzie will be a doddle! Hope I didn’t just jinx that!
Have a great week everybody!
Well that week went by rather fast! Only 15 more days before I depart for home.
This week I did my part in an exercise video. Yes I can hear you sniggering! Believe me no one is laughing more than me!
This video is for those of us with Pompe disease, showing exercises which will benefit us in particular. I’m not sure when it will be ready for the “In cinemas near you” announcement, but probably about the middle of this year. Just kidding about the cinemas bit! Although I see James Cameron of “Titanic” fame has bought a property near ours back in New Zealand. Maybe he will have heard of me by the time I get back and offer me a part in the new Avatar movie. I could be one of those blue people. I haven’t seen the movie, so I hope the blue people are goodies.
Actually that reminds me, years ago I was asked if one of my horses could be used in the Marlborough Man ads. They liked his Appaloosa colouring. I declined because I was worried about him being hurt accidentally. I’m sure the Marlborough Man went on to sell many more smokes regardless!
Click here if you want to get lucky!
A lot of people have used the word “lucky” when they refer to me being over here and seeing the wonderful things that I’ve seen. I admit to being a tad miffed when I hear that word. Then I contemplate it.
I think, if I didn’t have this stupid disease I wouldn’t be here, so I don’t feel particularly lucky in that respect! Wouldn’t I be more “lucky” if I was here because I decided I wanted a vacation? Then I think, would that be luck? No, that would be good management.
Then I think, I really am lucky that I am here, that I have the opportunity to be here doing this medical trial, that there is a medical trial, and that there is hope for my future. Although, we make our own "good" luck. I went out there and grasped hold of it, so, it’s not luck that I am here.
But, I am lucky, or should the word really be “fortunate”, to have had so many people who have helped make all of this possible. Is it luck that I have such good family and friends, good neighbours, people who care and have helped us in so many ways? I would say blessed, fortunate…
I just looked up the word “lucky ” in a thesaurus. The words that came up are;
Fortunate, blessed, jammy, fluky, auspicious, propitious, providential, timely;
I guess that blows my argument out of the water! I am LUCKY!!!
Here’s something I’m excited about. This week I bought a battery for my bipap (breathing machine) so that I can now go on a plane without being at the mercy of airlines who won’t accommodate my need to breathe!
Most chicks would be excited about shoes, I’m excited about a bipap battery. Sad but true!
Oh, I also got an “inverter” with it. Whatever that is… But all of this does come in a snazzy black bag. I’m sure I can dangle something blingy from it to make it look even more snazzy.
This week I have “met” a young man who is serving in the Royal New Zealand Navy.
Benjamin Revell has been diagnosed with Motor Neurone Disease. First and foremost Benjamin is a loving husband, and very soon to be Dad, to a new baby daughter.
I would like you to have a look at Benjamin's blog (soon to be published) and try to gain an understanding into what life is like living with MND. My husband’s grandfather had it, and my father was diagnosed with it (fortunately incorrectly).
Benjamin you are already making a huge impact on those around you with your guts and determination, your spirit and your kindness toward others. I hope to meet you some time! I really like your style xo
Here's the boys out boogie boarding back in NZ yesterday.
See the lighthouse in the background? This place is called Castle Point.
Sophia is still with me. I’m so surprised she has not been adopted yet. Is there anyone reading this who would like a beautiful black kitty cat that is full of love and purrs? I said to my husband that I wanted to bring her back to New Zealand. He said “no”! What? Sorry…I couldn’t quite make out what you said…
I have my first appointments already set up in Brisbane, Australia. First infusion is the beginning of March, and every fortnight thereafter. It will probably involve an overnight stay in Brisbane each time due to flight times and available flights in and out of where I live.
And for today's cuteness injection...
Until next time, over and under.
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. 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".
Here we are in The Swamp. Would love to see a game there one day!
Pretty cool for a college football stadium huh?
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
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 :)