2009 October - Aria MacDonald

What?!  Did I just write that!?

Hamish and I went to Starship today for a meeting with Dr E, Dr Tonya and Nurse Cate.  We didn’t tell Aria we were going cause she would of been disappointed not to go.

We managed to bump into pretty much the whole Gastro Team including the other two consultants walking up to the ward.  Both of them greeted us warmly and stopped to chat about our plans.

At 3pm when went down to outpatients for our meeting.  We talked about Aria and her health and where she is at.  Not good basically, she is sick, her liver and kidneys are struggling and she needs a transplant and most children like her would be in hospital.  We discussed a date for a liver biopsy for next week.  We talked about all kinds of things and plans for Omaha.  It was a very helpful conversation.

Imagine my surprise when I looked down at my phone and noticed the time was 4.45pm.  Nearly two hours talking!!  Poor Hamish ha ha.  But seriously, if our team in Omaha is half as nice as our team in Auckland then we will be very happy.  We went home and reflected on their kindness and generosity with their time and willingness to support us.  Very cool.

We are hoping to leave on the 1st of December for Omaha.  The funding process still needs to be completed before we can take the ‘hoping’ out of that sentence.  We are praying that process will be completed in the coming weeks

Aria is becoming pretty good at putting on plasters and dressings.  This was her latest effort and she was very proud.  “Look mummy I put on wiggles plaster myself- no help’

Aria’s story will screen on the 25th of October 8.30 am on TV One.  We are excited to see how she story on the telly.

Also we are off to Starship this arvo to see Dr E and Aria’s kidney Doc who does have a name of course, Dr Tonya is very lovely and offered to meet us a bit later. 

I am going include a little sentence in bold at the bottom of end post to remind you were we are at.

We are hoping to leave on the 1st of December for Omaha.  The funding process still needs to be completed before we can take the ‘hoping’ out of that sentence.  We are praying that process will be completed in the coming weeks.

Hamish and I have been spoilt this weekend.

But first I will start with a joke:

What should you do if you miss your Mother-in-law?

Reload and try again 🙂

I told this joke to my MIL and she thought it was hilarious.

But seriously our weekend was like this:

On Saturday night Hamish and I ventured out kid free to a concert put on by our group of churches which featured Randy Mayfield and was awesome.  Hamish and I continue to act most un-presbyterian and be pretty much the only people dancing and singing in a crowd of 100+.  Two things are not lost on us.  The ability to fully focus on praising God minus kids.  No one yelling, falling over, or demanding attention mid song.  AND God’s amazing work in Aria’s life that makes it impossible to keep our bums in our seats for the great joy that is God turning our mourning into dancing- literally!

Then my MIL offered to babysit the kids and shout us lunch at our fave Manukau eating spot AND then we popped over and the FIL cooked us a very yummy dinner and the kids had a grand time.

Anyway it was a really nice weekend and we are very grateful for the time out.  We love the kids but it is nice for Hamish and I to spend time together.  This is also not lost on us:  The fact there will be no in-laws in Omaha.  We will miss out, in many ways. As will the kids missing their grandparents.  As will Christine and Bob missing their grandkids.  We can only pray God might be pleased to provide others to fill this void and for hearts to be filled with His peace.

There was a flurry of email activity this morning.  I was grateful to receive emails from four different Starship staff all updating and reassuring us on their part in Aria’s health care and progress with transplant.  This was all before 9.30 this morning too! 

The business manager promised to email me each Friday and she has delivered as I knew she would.  Some of the info has come thru from Omaha and everyone involved is aware of the need to get moving.  Also Omaha said the 7th of Dec is the latest to get there in time to get on the list before Christmas.  YAY

Aria will need a liver biopsy next week and Dr E offered to meet with us too and talk about things.  Aria’s kidney Doc also increased her meds to see if it will help the HB.

So this morning was a bit dark and while nothing has changed with Aria as least we have reassurance and hope.  Both Hamish and I reflected on how good Starship are in taking care of Aria and us too really.  Praise God!

Got Aria’s monthly blood results yesterday.

Her bili is 193 🙁

And her HB is 75 🙁

Bad results, particularly the liver which has gotten worst pretty quickly.  We knew she was yellow but I never expected 193, rather more 150 ish.

It is troubling for us because we are still waiting for the green light to leave for transplant.  We aren’t even in the right country to get help.  And basically there is nothing more Starship can do to help Aria.  We aren’t even in the right country for help!!  Yes I have repeated myself.  But that is the struggle with Aria’s condition is that we have to travel to the US to see the right Doctors to get her on the transplant list and wait for a donor that may or may not come.

This is were my weak faith clings to God knowing He holds me much more tightly thankfully.  We daily beg Him to let us go so Aria might have a chance to live.

Aria did really well today.  She finally had the three jabs that had been put off because of her ill health.  Of course she cried when Hamish’s held her arms and leg and the needles went in but she recovered quickly and was happy and waving to the nurse when we left.

We did monthly bloods too and while I am confident about her HB, her liver results won’t be great.  Looking forward (or not) to hearing how she is doing there due to her increased yellowness.  It was great to be able to tell the Doc how well she was doing, to which he expressed surprise.  “That wasn’t what I was expecting to hear” he said.

Hamish took the kids for a walk and I met with the business manager who is handling Aria’s funding for Omaha.  It was a really helpful meeting and she is still confident we will get there this year.  There is lots of things to sort but we are praying hard we might leave on the 1st of Dec.  Got to ask God for specifics right?  But we need the go ahead in the next couple of weeks for that to really happen.  But we have renewed hope which is great.

But we continue to be happy with Aria’s great health (apart from the liver) and the blessing of being together as a family.

Aria is at that age when everything that you say can and will be repeated against when for better or for worse.

She just went out with Anita and Anita said “Cheers Bro” to me as she left. A second later a smaller voice said “Cheers Bro” too.

What makes me think about this more was our trip to K-Mart yesterday to look for some summer shoes. Asher was being the boisterous little boy he is and wanted to run all over the store. (This coming after he had set off the fire alarm at Mitre 10 Mega earlier in the day). I was taking a firm line with him, ie you run off, you go back in your pram. Asher was a little bit upset at being in his pram after one such event and was doing a little bit of complaining/crying/winging about it. Aria pipes up from her pram, “No Worries, OK”. Obviously our years of telling Aria that there were no worries and that things would be ok has rubbed off. It was very cute, even if Asher was less than convinced that things were ok.

It’s also cool as its another piece of evidence of just how well they interact and look out for each other.

More and more we are getting people commenting on Aria’s yellowness.  It is hard to deal with and know how to respond.  Mainly because your heart sinks a little because someone has pointed out what you are trying to ignore.  And annoyance because it seems a hugely tactless thing to say to the mother and/or father of a sick kid.

Today we went up to New World Southmall and the checkout girl said to the person packing ‘Do you see how yellow she is?  I know someone in hospital with liver failure’  This was right in front of Hamish while she was scanning our groceries!!!!!!  She then turned to Hamish and asked if Aria was sick.

Shocking and so rude.

This is the extreme end of our experiences.  We are happy to discuss Aria’s liver.   I had a really positive conversation with Hamish’s boss about it on Tuesday but it was in the context of her concern for Aria’s overall health and her positive comments about how well Aria is at the moment.  And it wasn’t the first thing she said when she saw her as we have been getting recently.

It is hard because we know the only thing that will fix it is a transplant.  We just desperately want to get to Omaha but funding seems locked up in hospital politics and doesn’t seem to be progressing.

Sigh