Welcome home – hello cold and flu season!

Addison Australia  16-41-37 2013-01-17

It’s a cold and rainy welcome back to reality for the McYongs. After four long nights (but who is counting?) of jet lag for the Princess, she is back to her usual routine of sleep. Unfortunately, the little cough she picked up in Hong Kong blossomed into a full cold once we got home. She seems to be oh-so-slowly getting better and our pediatrician wasn’t too concerned when he listened to her lungs on Friday. We are still a little bit on the paranoid side after October’s bout of pneumocystis pneumonia, but Addison is on a prophylaxis dose of antibiotics to prevent recurrence.

Addison’s first blood tests in seven weeks presented us with a couple of surprises. Her Tacrolimus levels have gone from 1.6 to 6.1, so her meds are being reduced after we bumped them up a little for the trip. Her kidney numbers show a little improvement. Her neutrophils and WBC are still down, but could be attributed to her cold. And her hemoglobin has skyrocketed again, which means we are reducing those rusty-nail iron supplements. Now we are prepping for the next big thing – another biopsy on February 19.

The glow from our trip to Australia hasn’t faded completely. There were many fantastic things we got to see and experience, but when it comes to our “special circumstances”, two things really stand out. Vacationing in a summer destination in the middle of our nasty cold and flu winter season was a lovely break from my ramped-up germophobia. It was wonderful not to hear any hacking and snotting coming from random strangers in grocery stores, at the coffee shop, waiting in line-ups, on the crowded sidewalks. And the other high point was the absence of medical crap. No blood tests, no emails or phone calls to or from Addison’s transplant nurses and doctors, no visits with any medical professionals (well except for the nurse at the resort who checked out the ugly centipede bites), no letters from various health agencies involved in Addison’s care, no trips to the hospital. WOW. I actually didn’t even think about any of that for several weeks. It’s the simple things in life that are the best.

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I know most of our family and friends – at least those of you who are regular readers of our blog – wholeheartedly support our choices to make Addison’s life as normal as possible, but I know a few skeptics out there question our need to show Addison the world and give her a taste of one of our passions – travel. We are the first to admit there are risks when we take our immune-compromised child on the road. We have to consider things most people don’t even think about…What is the medical system like there? Where is the closest hospital? Where in the country do they do transplants? Can we get insurance? And there are several places on my bucket list we probably won’t ever be able to take our daughter, including a trek around Nepal or another visit to Antarctica. Let me be clear – we would never go against the recommendation of her primary care doctors. We want our Princess to have a long and healthy life, but we also want her to LIVE. There is something so transformative about immersing yourself in a completely new environment and culture. By travel, we make the world smaller and bigger at the same time. Headlines in the news which were once quickly forgotten become familiar places with personal memories. We have the time and space to enjoy the little moments, to relish the big adventures and to savour every sight, sound, taste and smell. And now we get to do it all with Addison. These are the things we will long cherish regardless of what the future holds.

“…travel, at heart, is just a quick way to keeping our minds mobile and awake…if travel is like love, it is, in the end, mostly because it’s a heightened state of awareness, in which we are mindful, receptive, undimmed by familiarity and ready to be transformed. That is why the best trips, like the best love affairs, never really end.”

Pico Iyer, “Why We Travel”

And that is why we will keep traveling.

Love,

Elaine, Aaron and Addison

14 thoughts on “Welcome home – hello cold and flu season!

  1. and those skeptics probably haven’t travelled a lot i’d think! and oh how well i do remember when planning holidays — the things you have to think of when you have a child with a medical condition that is rare. Sometimes we could take him and sometimes not – with Morgan it was the heat for the most part that prevented him from going places (tho Okanagan Lake was okay where we stayed) tho now he is planning on going to go where you just came from, having met a father at the Toronto EB conference who’s teenage son has EB. This will be your challenge in (what will seem then) not so many years – letting Addison go places on her own and trying not to worry too much or appear too apprehensive! Life — worth living!

  2. Hello and welcome home! It was so good to read of your adventures! If you have the means and the health, travel! You are so right Elaine, you have to LIVE. That is exactly what the gift of life is all about!! 🙂

  3. Elaine….you are so right about those of us following your blog. We too want Addison to LIVE and experience everything and anything that she can. It’s what makes us all the people that we are. Keep travelling and living. That’s life.

  4. It is just wonderful to live vicariously through all your world adventures with the princess… I think it is fabulous that you are able to travel and give Addie a LIFE not just trips to hospital, appts and all the stuff that goes with exceptional health needs…. She is thriving and that is thanks to wonderful parents and extended family that supports her in every way…. Long live the McYong Clan… long may Princess Addie rule the McYong household…LOL…sorry couldn’t resist that…. we have all parented toddlers and preschoolers… and now who is usually in charge 😉

  5. Thank you for the inspiration! My granddaughter had a heart transplant 10 months ago at the age of 8 months. Her parents traveled extensively before she was born. Hopefully with role models like you, they will all travel again as a family.

  6. This is one of my fav photo slideshows to date. 🙂 Love it. (maybe I’m biased cause you are in HK and there are pics of Luca too!) Just love seeing how addie enjoys seeing and experiencing the world around her – Australia!!! Hong Kong!!!! I can only imagine how much courage and strength it must take for you and Aaron to consider everything and ensure you are providing the best for gorgeous, precious Addison – you are Addison’s parents and we know that you will always have her best interests at heart (no pun intended). There will always be skeptics and people who don’t agree with what you are doing, but even with “normal” babies/kids – there are always people who don’t agree with what you are doing…Just remain confident, strong and know that you and Aaron are absolutely amazing parents.
    Keep travelling….laughing…and living!!!!!!!!! (and coming to HK!) 🙂

  7. Welcome home to all of you. Had no idea a centipede could do that type of damage, poor little bean – hopefully it wasnt too painful for her (or you LOL) Definitely travel while you can and create all the memories possible. Stay strong

  8. Hello, I think your travels with Addison are wonderful – gives you all time to do fun and recreational things together.that will create a wonderful memory bank for the future. You are all amazing and I feel lucky to be a vicarious part of your ‘journey’.

  9. Welcome home! We look forward to your blog and slideshow. You are a beautiful family, and I’m happy for you that you have an extended family to travel with, and family to travel to. It’s great to see you back on Global too. Be well, little princess!

  10. I’m so glad you guys were here during the extreme heat and not here for the extreme wet! There are fallen trees everywhere and it was too dangerous to go outside for 2 days. We had no power for 3 days. It looks like I’m putting Lady Elliot Island on my to do list, those pictures were beautiful and exuded the word ‘relaxed’. Again, so sorry about that nasty centipede. Addison had the ‘trout pout’ that so many women pay big money to get injectables. Stay healthy and hooray for the improved iron levels!

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