I had my #10 infusion yesterday. NUMBER 10!!! Cor blimey! It’s the last one before Christmas, and the last one for this year. Only 4 more left to go!
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.
Full recipe instructions here
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.
More on this delicious ensemble here
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
It’s blog day again!
11 December, the time is speeding by until my family arrives. I have one more infusion scheduled between now and then, so I should be in good form to keep up with them all! My breathing is feeling pretty good, I’m excited about that! I'm so lucky to be here, I can't even tell you how much.
Sophia the foster kitty is still with me. She’s so cute and friendly. It must surely be only that she is a black cat that she hasn’t been adopted, because her nature is beautiful. If she hasn’t been adopted by the time I go home, I think she may come with me. Wait, does my husband read this??...ah well, he knows what I’m like lol.
Sophia getting into the Christmas decorations... I mean Christmas spirit!
This week I went to Disney World in Orlando with Monique who is another Pompe patient. Monique was recently in New Zealand to help with the campaign for getting medicine funded for Pompe disease.
Monique invited me to Disney to go to Mickey’s Very Merry Christmas at Magic Kingdom. We stayed there overnight and went to Animal Kingdom the next day. The Christmas party was lovely. The decorations and the fireworks were just beautiful. I felt lucky to be there and witness it all, such beautiful memories to last a lifetime.
One of the things I love about being in America is the way they honour their troops. Everywhere you see "Thank You" messages and other messages of support to the men and women who are in the military. TV, the theme parks like Disney and Sea World. Disney chooses a veteran to help take the flag down and when you see the proud face on that veteran, it really brings tears to your eyes. At Sea World during some of the shows they ask the service people to stand up, then they put them on the big screen and everyone gives them a huge round of applause. We don’t see this sort of thing in New Zealand unless it is a day like ANZAC Day.
Animal Kingdom is fantastic! We went on a safari ride in a truck. Our driver had just the best sense of humour! We went tearing around through rivers and dirt tracks, past cheetahs and crocodiles, rhinos and hippos. So much fun!
The Tree of Life is beautiful! It has a whole range of animals carved into it. See how many you can pick out of this photo!
There are no prizes for guessing, because I don't know how many there are, so...
Monique and I at the Tree of Life
These naughty squirrels raid the baby strollers for food while the occupants are away on rides.
How can you mind when they are so cute?!
I hope you've enjoyed this exciting installment of Allyson's Florida Blog :)
Stay tuned for more next week!
And if you haven't checked out the below link yet...you're missing out!
Norad Santa Tracker
It’s blog day again. I’m sure I just did one yesterday!
I had my 8th infusion on Friday. All went well as per usual and I slept through it as I normally do. I could do with some of that IV Benadryl for sleeping at night time, it puts you out like a light! A couple of people have mentioned my breathing looks a lot better, and I have been thinking that myself. Sometimes it’s not so good, but I think it is improving. Hope so anyway! Breathing is a good thing for “aliveness”!!
In my last blog I introduced Blossom the lovely foster cat. She has now been adopted to a forever loving home and I now have “Sophia”. Sophia is just gorgeous and a total love schmuck! She enjoys sleeping in sinks and detests having her claws clipped. So if you’re looking for a gorgeous black cat who will smooch you until you can be smooched no more, try Sophia on for size!
And for anyone who is superstitious about black cats…A friend sent me this saying;
"A black cat crossing your path signifies that the animal is going somewhere" (Groucho Marx)
See, that’s all it means! It’s just going somewhere, just like the chicken which crossed the road, it was only going to the other side, simple as that! Cast your superstitions aside and get a black cat, they're awesome! :)
Critter of the week
I saw one of these sitting on the grass verge on the side of the road driving out to the Florida Keys. We don’t get these in New Zealand, so to see one of these just sitting there on the side of the road was very cool!
...Ok I just did a google search on Iguanas, apparently they are not very cool!
Adult iguanas are large powerful animals that can bite, cause severe scratch wounds with their extremely sharp claws, and deliver a painful slap with their powerful tail. Iguanas normally avoid people but will defend themselves against pets and people that try to catch them or corner them.
Due to a combination of events, the Green Iguana is considered an invasive species in South Florida and is found along the gulf coast of Florida from Key West to Pinellas County. The original small populations in the Florida Keys were animals that were stowaways on ships carrying fruit from South America. Over the years, other iguanas were introduced into the wild mostly originating through the pet trade. Some were escapees and some were intentionally released by their owners; these iguanas survived and then thrived in their new habitat. They commonly hide in the attics of houses and on beaches. They often destroy gardens and landscaping. They seem to be fond of eating a native endangered plant, Cordia globosa and feeding on Nickernut, a primary food plant of the endangered Miami Blue Butterfly; additionally on Marco Island, Green Iguanas have been observed using the burrows of the Florida Burrowing Owl, a species of special concern, all of which can make them more of a serious threat to Florida's ecosystem than originally believed.
In January 2008, large numbers of feral iguanas in Florida dropped from the trees in which they lived, due to uncommonly cold nights causing them to go into brumation in which they lost their grips on the tree branches. Though no specific numbers were provided by local wildlife officials, local media described the phenomenon as a "frozen iguana shower" in which dozens "littered" local bike paths. Upon the return of daytime warmth many (but not all) of the iguanas "woke up" and resumed their normal activities. This occurred again in January 2010 after a prolonged cold front once again hit southern Florida.
That’s a word i've never heard before…”brumation”. Although i've also never heard of a "frozen iguana shower"!!
When I was in South Beach there was a man on the sidewalk painting tiny little paintings through a magnifying glass. The paintings were of local buildings and people. I bought one for only $20! It was of a church in the same street, so I took a photo of the man doing the paintings, and a photo of the church itself. It is a great memento of my trip to the USA.
Here is the website for the man who was painting. If you’re interested in miniature art, this is well worth checking out. The detail in the paintings needs to be seen to be believed, exquisite!
This is the church i got the painting of. It has a beautiful stained glass window in the front there, but it doesn't show up well in this photo.
I love the architecture in South Beach!
And the countdown is on for Christmas.
I LOVE Christmas!!
My husband is probably glad that I am not in town at the moment because the house would be filled with all of those wonderful Christmas songs being played from my countless Christmas CDs.
I'm looking forward to seeing my family soon, James and Rochelle on the 20th and Steve, Ben, Josh and Pops on the 28th. I still can't believe how lucky we are that wonderful people have helped bring us all together for the holidays :) Thank you!! I don't even know their names to be able to thank them personally.
Until next time... xo