As Sandra pointed out, I forgot to mention what happens after the last of those 4 treatments. Thank you Sandra 🙂 Nice to know I have another reader lol. xo
After my last infusion here in Florida, I will move onto the extension part of the study and have my infusions in Brisbane, Australia every 2 weeks, forever and ever Amen. Or until there’s a site in New Zealand, or a different treatment/cure is found. But I don’t mind at all having to do that, it’s just great that I am able to keep on being treated! And no I will not buy smokes for anyone duty free each time I cross the Tasman! Just sayin’!
Yesterday I met another lady who also has Pompe. She is from Canada and is unable to get treatment funded in her province. It’s always great to meet other people with this stupid disease.
I went out for dinner with her and her husband last night to a great Mexican restaurant. It was a lovely evening talking about kids and their lifestyle in Canada.
This week I went to the store to top up my mobile phone. I use one because it costs a fortune to phone from the hotel phone. Mobile phone plans are very cheap here in the U.S. Anyway, I digress. The lovely man who served me asked where my accent was from. I still always think that question is hilarious; I don’t even have an accent!! Right??
I said “Take a guess, bet you can’t guess it”.
He guessed Australia, my reply “NO”!!…
“You’re right, I can’t guess”.
“Oh you’re a KIWI”!
“YES! How did you know about Kiwis”??
He said he was in the Olympics in 2000 and another one and met many Kiwis and they were “beautiful people”. I asked what he did at the Olympics. Turns out he lost a leg in a car accident when he was younger, and he was running in the 100 and 200 metres in the Paralympics…
Can you imagine that? The guts it would take to do that? In the face of total adversity, he kicked it up the backside and did it anyway. Maybe I will meet him in a race someday…
On Saturday night I was invited to the staff Christmas Party at Dr Byrne’s house. Who gets to go to their doctor’s Christmas parties??? The gorgeous Katie and husband Dean picked me up and dropped me home again. We had a great time. I would love to have been able to dance along with the rest of the crazies!
Some people also took part in the Xbox Kinects Sports games. WOW! That is so cool, and watching the people is very funny!
There was a Secret Santa. Very different than I have seen it done before, but totally fun! If you bring a gift, you get a number. At the beginning of the Secret Santa #1 goes first, picks a gift from the pile, opens it and sits down. #2 then gets called and if they like the look of #1’s gift they can steal it. If they steal it, #1 gets to choose again. This goes on until the last person gets a gift. Gifts can only be stolen twice. The bottles of alcohol were quite popular where stealing was concerned lol.
I think this will have to be employed at our Christmas get togethers back in New Zealand. What do you Willow Parkers think???
I still have Sophia. She will be with me throughout the holidays unless someone specifically phones up to adopt her. I’m starting to get attached to her since she has now been with me for a while. So if she doesn’t get a forever home soon, she may like New Zealand! I love her, she has spunk and she is also SO loving!
Actually she could be described as “awesomesauce”. This is a new word that the gorgeous Lindsay has tuned me in to! You know I’m coming back to New Zealand with all of this new stuff! Including fried turkey, turducken, and a BEAUTIFUL marinade courtesy of the lovely Mrs Byrne, oyster sauce and garlic, this is for pork. SO YUMMY!!
More on turducken and fried turkey below!
Wash bird inside and out, and allow to drain. Rub turkey all over with House Seasoning. Coat turkey with dry rub. Allow the bird to sit until it reaches room temperature.
Heat peanut oil in a turkey fryer or a very, very large stockpot to 350 degrees F. Lower turkey into hot oil, very carefully, making sure it is fully submerged. Fry turkey for 3 minutes per pound plus 5 minutes per bird. Remove turkey from oil and drain on paper towels.
What is turducken? It is a chicken stuffed inside a duck which is then stuffed inside a turkey.
The term turducken comes from the combination of tur(key), duck, and (chick)en. It is fast becoming a popular recipe for Thanksgiving. Each slice contains portions of chicken, duck, and turkey with stuffing in between the layers. Plan on adequate preparation time. It’s not difficult to make, but it is a little time-consuming. The end result is a worthy show-stopper.
Since the next blog is due on Christmas Day, I will either have to be a day early, or a day later…maybe I will skip a week. Sorry in advance to my avid reader 😉
It has crept up on me so quickly. Christmas Eve here will be Christmas Day in New Zealand, I wonder if Father Christmas will know where I am. I’ve been quite good all year…
1 more sleep until my big boy gets here, and 8 more sleeps until my little boys get here!! I can’t tell you how much I am jumping out of my skin to see them!!
To all of my family, who sometimes I don’t know how they put up with me! To those friends and strangers who have supported us throughout this strange yet wonderful year and to all of the new friends I have made along the way. To all of the people whom a year ago I didn’t even know existed, and have now had a huge impact on my life… thank you, thank you thank you. Merry Christmas everybody, and blessings to you all.
To my fellow Kiwis who are still fighting for treatment in New Zealand for Pompe, let’s make 2012 the year in which we ALL get treatment.
Much Love, Allyson xo