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September!
I don’t have anything particularly wonderful to say. To be honest it is all rather boring around here. Boring and busy. The days seem to fly by and not even sure why.
Aria continues to do well. Her walking and standing are coming along really great. Her fine motor skills like writing and colouring are not going super well. Which is very odd because she loves OT and hates PT. But seems to be doing better at the PT side of things. We are very much hoping Aria will be starting school in June 11, in New Zealand. So encouraging her use of a pencil and felts is kinda important.
It is exciting to think of her going to school, less exciting to think of her starting during cold and flu season. Mmmmm. Still her lungs hopefully will be healed and better by then. We are trialling her off O2 during the days and that is going well. She sits around 95 which is ok. We changed O2 suppliers, thankfully, yesterday and now have better equipment. So we can take her rate right down to 1/8 or even 1/16 of a litre of o2. She does really well on 1/4, sits at 100. So she is making progress.
We got to church on Sunday which was awesome. Aria loved it! She is really excited to go back. Everyone was so kind to us. We got asked a few times whether it feels like we are on vacation or if this is our life now. I said it feels like neither of those things more like recovery. We are still recovering, like Aria, from what we went thru and what we saw our daughter go thru. Very painful still. Some days I feel like I just have nothing to give. I hope that will change because I want to give a lot.
Lastly we were VERY excited to read this article. Finally fundraising for the renovation of Aria’s ward, 26B and 26A has started. It is badly in need of a reno and I am dreading going back. Anyway. New Zealanders please consider donating, honestly $3 amount quickly add up! See below.
The fundraiser runs through September atwww.trademe.co.nz/starship. People can give $20 by dialling 0900 STARSHIP or text STAR to 469 to give $3
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About Aria
Aria MacDonald
Aria is an amazing four year old little girl from Manurewa, Auckland, New Zealand. Aria received her gift of life on the 6th of February 2010, a small bowel, kidney, liver and pancreas transplant at the Nebraska Medical Center, in Omaha, USA. Sadly the new intestine has rejected and Aria was relisted on the organ transplant list on the 27th of April 2010. Aria received her 2nd gift of life on Mothers Day 9th May 2010.
Aria’s story begins after birth when she was diagnosed with a very rare condition of the bowel known as total intestinal aganglionosis or total Hirschsprung’s disease. There is no cure and it means she will never be able to digest food.
Fundraising progress
Aria's support to date:
Progress meter: 75%
Links
- Gifts from Heaven
A group of kids who have had or waiting on bowel/liver/stomach transplants - Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
The wonderful charity that supports Aria