First fete... just getting used to this whole school thing!

First fete prep ever.  I can't believe that my Mum and Dad this every year for what feels like forever! Plus the netball/swimming/triathlon support, help, baking and set up/pack up.  How do I ever even begin to repay my parents?

Very daunting and my only contribution is baking and preserve making (first time for both).  As long as it does not have my name on, surely I can not be held responsible for food poising/botulism?

Inspiration when I needed it...

The right place at the right time and I found exactly what I needed to hear to lift my spirit.

I found A-M's blog our second day in to transplant and I have been stalking it ever since. I have never commented or mentioned it before but it is my most favourite blog ever and one of the inspirations in starting my own.

Her writing is honest, insightful and her thoughts are so human, ,motherly and normal. I want to send her one of our little one's thank you cards (But I don't want to really seem stalker-ish) because her blog got me through many restless nights and was a very welcome distraction first thing in the morning after normally very long nights of morphine and mucositis.

I used to check a million times over at about 5ish in the morning to see if there was a new post... I used to try and beat or be on the same timing as her posting... Odd but nothing else to do in a positive pressure air locked isolation transplant room!

Since I have revealed my most favourite blogger, I intend to link to her site more often. She is amazing and a joy to stalk her blog every day.

XXxxx

First Plasma Donation

I spent an afternoon at the Brisbane blood bank donating plasma for the first time. It was completely less daunting that I was expecting and was a relaxing afternoon with warm tea, heat packs, a very comfy chair and cosy blanket.

I was amazed about the amount of people donating plasma. The chairs were filled, donation collected and then set up again for the next generous donor. There were suits working on their blackberry's with their arm connected, there were uni students, a taxi driver and what looked like some sort of a tradie. I wanted to thank them each personally as there donations may have been received by little one at some point. I am forever grateful for such an amazing service.

I also think every day of our donor. I dont know how I can put in to words or actions the gratitude we feel for her for saving our sons life. It would have been about 3 days of pain and discomfort, but she has provided our son with a new blood system and a new life.

You can follow this link to the Australian Bone Marrow Donor Registry and see how easy it is to join if you have the capacity. If you were able to see the amazing children going through I think anyone would sacrifice a bruised pelvis (it has been described to us as being punched in the lower back by Jonah Lomu) for a few days. I personally can't wait and would be honoured for a bruised lower back if it means saving a life (although I am very biased and have never felt so passionate about it until it has affected us directly... I didn't even know what bone marrow was until this time last year... I thought it was something you fed your dog)!

I hope that if i can raise enough awareness for even a few more people to join the Registry and allow our doctors the best tissue typing option matches for their patients, I will be thrilled!

 

 

Bit of an off day

 

Little one is having a rough day. Temps of 38.9 and a lot more vomiting. His temp is going down slowly, but he is not himself and breathing too fast for our liking... Not his normal fast, but faster than his normal.

Big one is fighting a head cold and middle one has bumped his head to add to his existing bruise and cut one of his sucking finger fingers.

Trying to keep them all quiet and restful... It's just one of those days. They all smile through it and I love them beyond words for it. Little ones mood is all smiles but I think he is not feeling all that great.

I am looking forward to a more direct plan with respiratory this week. I am thinking he will need a blood transfusion tomorrow as his red blood has not had a chance to catch up from the weeks blood cultures, vancomycin levels and blood counts. He hasn't had a transfusion since early April, so it's a little reminder that I am putting a little too much expectation and pressure on little one (in my mind anyway). I am going to ease back and let him dictate what he wants to do instead of pushing him with his exercises and awake time.