Friday, April 29, 2011

Party tiiiiime! (for the most part) Excelleeeent! (Day +410)

Hello all,

It has been a while since we last updated the blog. Max has been quite well recently and continues to impress us with his feats of mental and physical dexterity. Since we last spoke, we have had many reasons to celebrate including the anniversary of Max's transplant, a special family birthday and, depending on your point of view either the holiest of christian holidays or a celebration of cheap chocolate, Easter.

The one year anniversary of Max's transplant was on the 15th of March. This was quite a momentous occasion for us and we partied accordingly. Oma, Mawa, Opa and Mapa all helped us celebrate the milestone with presents and a magnificent feast! Needless to say, Max got into the spirit of the evening and very much enjoyed being the centre of attention.

THE  'BIRTHDAY'  CAKE!
Excited 'birthday' boy
The Basket of Goodies

It's still a long way away but once Max has fully recovered, we are planning on having a massive party for all of his family and friends to celebrate his overcoming of Wiskott Aldrich syndrome. Stay tuned.

A couple of weeks later, Max had a particularly full on lip-blowing-up episode, which we managed to capture for posterity...  

Nice lips huh!?
Later that evening, as Tim had endured a big evening at the footy and had fallen asleep on the couch, I decided to let Max sleep in our bed...just incase...

As it turned out, I was so thankful that I had decided to do this, as during that evening I awoke to noise coming from our back room....as I went to investigate...I noticed the back door was wide open...and Tim still asleep on the couch! To cut a long story short Tim and I startled the (...insert rude derogatory terminology here...) from attempting to disconnect our computing equipment and they fled....leaving only with my laptop! The immediate concern for us was whether I had backed up my thesis...which thankfully I had!!! Police arrived within 10 minutes, sniffer dogs managed to track a scent to a few blocks away, and finger print officers did what they do best (but unfortunately were unable to detect any prints). Through all of this excitement, Max remained sound asleep in our bed!  

The next weekend we celebrated Auntie Lou Lou's birthday. It was also the first time that Max and his five cousins, including the twins, had all been together. It took a little while for Max to feel relaxed and comfortable with so many other 'little' people, but by the end of the day he was enjoying himself very much!


Cousins
And then a couple of weeks later it was Easter. The Easter Bunny came to visit Max, the difference this year of course is that he visited at home and not hospital. He (or was it a she???) pulled out all stops for Max, building an obstacle course with an Easter Car Hunt and the prize of a scrumptious Chocolate bunny at the finish line! Just how clever is that Easter Bunny?

The Easter Bunny trail....leading to surprise Cars...
Surprise Car number 3...
...and the big chocolate bunny!

Analyzing his surprises
Happy Boy!
When not partying or eating chocolate, Max has been spending his time:

Filling out activity books designed for children of much greater ages, which he thrives on!...


Jammin' with Dad...


Playing a lot of soccer and golf....




And watching a lot of television (Current Favs: Dora, Mickey Mouse Clubhouse and Big Bang Theory).

Medically there is nothing much to report. Max's skin is stable; it's not getting any better but it's not getting any worse either. He had another (overdue) infusion of biphosphanate to strengthen his bones. Apart from the stress involved with trying to get the canular in, the infusion went along well with no dramas. Hopefully Max will only need to have one more infusion (in about 4 months time), and then depending on his bone density results we can say sayonara to them.

Chillin' in the Day Oncology Suite!
His muscles are ever so slowly but surely gaining definition. His weight is still low, but rising nonetheless...he broke the 14kg mark at the last weigh in! He still has a way to go to match his pre-transplant weight of 18kgs. Unfortunately Max's 6 week stint of 'in-home' physiotherapy sessions came to an end a few weeks ago. But some great times were had and I now have excellent ideas put in place of how to keep up with Max's strengthening regime.

In Home Physio session
Tim and I managed a small getaway to the city for the night (including massages and dinner....courtesy of my wonderful group of friends - Thank you so much for your generous gifts). Tim and I had an absolutely wonderful time! We have also made the decision to renovate our humble abode so there are plenty of exciting times ahead.

1 comment:

  1. I LOVED the update. I love seeing him smile and laugh and act silly (I kept waiting for him to hit the cymbal). Way to go! and congratulations on hitting the one year mark. May he have many more happy days ahead. Peace and love, Aimee

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