2007 April - Aria MacDonald

Close Up came to interview us on Monday.  They are planning to air the interview next week sometime hopefully.  We will let you know.

 Aria is getting very clever.  This morning our internet wasn’t working and I did this angry grr sound and Aria copied me!  I did it again and she did it again!!  She gave me big grins and thought she was very clever for sounding like mummy.  We better be careful from now on, we have a little copy cat listening to our every word.

She can also understand instructions now like ‘hands up in the air’ when you are changing her and ‘clap your hands’.  The word ‘no’ is a work in progress 😉

Wow – we had two visits to Starship ED and weren’t admitted either time! This is a first for us as we normally end up being admitted to the ward. Aria has a cold virus but they are concerned that it might move to her chest and turn nasty.

The thing we like about the care we get at Starship is that it is consistent and careful. They don’t like to take risks with Aria’s health and are always careful. We like that!!

So we are going to see our GP for the next couple of days to be safe but Aria is improving as of last night so that is good.

The grand total raised at the Snazzipants auction was $2,298!!! Another WOW for the weekend!

The Snazzipants Auction was a hit!!

They raised over $2,000 for Aria!!!

We are so blown away by peoples generosity!!!  There were people that donated items and people that bid online and in person.  And finally and importantly the brains behind Snazzipants- Pippa and her lovely supportive family who did all the hard work to organise it all!  A huge task!

 Hamish and I were talking just now about how you express to people how truely grateful you are to them for their support.  We decided that there are no words except grateful, humbled and thankful and times that by a million or so.

Although it pains me to do this I should better update you on Aria’s health.  Unfortunately she has caught a normal kiddie virus but nothing is straight forward for her.  We are taking her in to Starship tomorrow for a check up and probably medication just in case it has gone from a virus to something more sinister!

We are hoping it hasn’t but we must be extra careful with her.  Her doctor is away for two weeks.  Without fail Aria gets sick when Helen is away.  It is getting to be kinda spooky really.  Hopefully we will not be admitted this time.

This Friday the 20th of April will be the date of our first public fundraising event!! Snazzipants, a reusable nappy company, are opening their very first retail shop. For the opening event they are holding a fundraising auction with the proceeds going to Aria.

Generous people and companies from within the cloth nappy community have been sewing and knitting frantically to donate beautiful items for people to bid on. Items include sleep sacks, knitted items, cloth wipes and of course lots of gorgeous nappies!

Where: 145 Kitchener Road, Milford (see a map)

When: 4pm

See ya there!!

Update on Lara Sutherland mentioned in our last post:

She received a liver from a kind family who had lost a loved one and decided to donate their liver to give Lara the gift of life. What a wonderful thing for Lara!!

Lara is in PICU and is recovering.  It is a full on time for Mum and Dad, one can only imagine.  Hopefully the next couple of days bring good news and that liver starts to work well.

Tonight we had a bit of a tough reality check about the realities of a transplant situation.

While we were in hospital the last few weeks Anita made friends with the lady across the hall from us and their wonderful little girl Lara. Lara is in quite desperate need of a Liver transplant, an organ which is not easy to come by in New Zealand. Today they found out that their hopes of having Lara’s dad Hamish (strangely enough) as a live donor have been removed. This is devastating news as the Dr’s believe they can only keep Lara stable for another few weeks.

This has deeply impacted Anita and I as the Sutherlands are a lovely family. It doubly hurts as this is close to home for us and an insight into challenges that still lie in wait for us.

Please pray for Lara and her family, for strength, that a liver would become available or a live donor would come forward.

Please take a look at Lara’s webpage on Caringbridge to help guide your thoughts and prayers.

Miss Aria is happy and healthy and home in time for her first Easter!

We are so grateful to be home, it was a really difficult time for us.  Thank you to everyone who visited, provided meals, presents, text messages and cards!  It means so much to us and makes the time in hospital just a bit better!  It is really isolating and lonely sometimes and to know people love and support you is great.

We met some wonderful and courageous parents during our visit.  They are the proud parents of beautiful daughters around the same age as Aria.  We where honoured to meet them and hear their stories.   They are facing huge situations with their babies and they where offering support to us!  Can you believe it?  It is very humbling. 

Well Anita was sweet talking our Dr today and it looks like we may get to go home before Easter. To get to that stage Anita has to learn how to do IV Antibiotics so we can do it at home. It sounds like we need 2 more weeks of antibiotics to get this thing sorted. At least it sounds like we can now do this at home.

Aria continues to be her cheerful self, and everything seems to be returning to normal. Anita is really good at making her laugh, especially in the evening after she goes back onto her TPN and gets her second wind before going down for the night. I some time wonder if Anita stays awake at night trying to think of new ways of making her laugh.

We had some really interesting visitors today a teenage girl who had long segment Hirschsprung’s when she was a little girl and her mother. It was really good to talk to people who had overcome the Dr’s expectations and who had lived through a situation in some ways similar to what our little family was going through. It was encouraging to meet and talk to them.

Its amazing what people have been brought into our path on this journey and who has stepped up to be of great help and support to us. I look forward to see what lies ahead for us all.

Yesterday Aria and I where sitting on the bed. The nurse came in and her and I were chatting. Suddenly out of the blue Aria said ‘hello’ or it sounded more like ‘ello’. The nurse jumped for joy and was very honoured. It took me a couple of seconds for it to register. It is hard to know but I know we say ‘hello’ to her all the time and say ‘say hello Aria’.

Aria has been saying ‘mum mum mum’ for a while. I don’t know if she knows it is my name or not. She has been waving hello for a couple of months now. And knows to clap when you say ‘yah for Aria’ or ‘yah for Daddy’. Daddy normally gets a clap when he gets home or arrives to the hospital.

So as you can see she is back to her normal self. Yesterday we also had time off the pump and went for a walk. We were sitting on the couch in the ward hallway and she would smile and talk to whoever went past. She has the coy/shy smile thing going which is very cute.

Aria and our cause got a mention in the Sunday Star Times today. We get this paper every week as it is our little luxury and Aria likes to eat/tear/screw up/wreck the glossy magazine that comes in it. No we don’t let her play with the newsprint. Anyway check out the About Town section written by Bridget Saunders. I love this section but Aria’s Dad prefers the Sports of course.