2009 October - Aria MacDonald

Fridays unfortunately seem have to turned into dread.  This afternoon was spent lurking around the computer waiting for news.  We got some and while they are negotiating the nitty gritty of the contract the Minstry are still needing assurances that this is the right option of Aria (!?).  We are wide open for any other suggestions other than transplant, seriously!!  And they seem to still be discussing basic stuff I thought would of been covered ages ago.

So we are discouraged as we need to have an answer by the 10th of Nov to realistically leave NZ in time for make it for this year.

But we are certain we will get there.  There is no doubt in our minds this will happen because we believe very much that this is what God is calling us to do for Aria and He has provided amazingly, even this week, for our needs in Omaha.

Two fundraisers happening for Aria.

Baby & Child Fair, Sunday 1st November, 10-12 at Maraetai Hall, Rewa Rd, Maraetai.  Sam, Lara’s mum has put lots of effort into this so we are hoping it is very successful.

Lisa who is an lovely Aria supporter has this auction running at the moment for her late mothers horses who need a home with the proceeds going to Aria.

One of the fascinating parts of parenting is seeing the social skills of your children develop. Aria and Asher’s interactions are great to watch, they obviously love each other and take great enjoyment in each others company, but like any little sinners and any brother and sister, there are times when things get messy. There are also times when they express their rebelliousness against us as parents.

In these situations it is interesting to see them learning the right behaviours and how to resolve conflicts and admit their faults. For a while there, Aria flat out refused to ever say sorry. Now she and Asher have both learnt to say sorry and show genuine remorse when they hurt each other or offend us.

One of our big pushes lately (after reading some great advice in PastorDad by Mark Driscoll) has been to explain to them that they are naughty and that doesn’t just bother us, it bothers God and they need to say sorry to God too. When they do act up and require time out or a serious sit down and talk, we also pray with them prayers of repentence and to ask God for forgiveness. Hopefully this will teach them about their need for Jesus and what he has done for them.

Anyway as you can probably tell by now, no news about Omaha, but we are still hopeful.

Aria is a big food fan.

Last night she decided that dinner was going to be hot chips.  I know- super healthy right?  However our dinner arrived care of Rosemary and it was yummy smoked fish risotto!  I know which one I would rather have!!!

So we convinced Aria that hot chips could wait until lunch tomorrow.   It was a hard sell to be honest but we managed it.  First thing she said when she woke up- Hot chips for lunch Daddy!!  She has an amazing memory.  So her and daddy are off to buy $2 of hot chips for lunch today, lets hope it stops pouring with rain for the walk down to the end of the road.

Aria loves chips, hot ones and potato crisps.  She loves bananas, chocolate and lots of other things including marmite and Watties Tomato Sauce, what a Kiwi kid.

We were sitting on the beach on Saturday with Rebecca and Matt and eating yummy chicken wings, potato salad (very yummy made by Matt) and you guessed it, hot chips.  She was dipping her finger in the tomato sauce and putting it in her mouth saying ‘Mmmmmm yummy’

She is doing well and everyday looking a little tiny bit less yellow or at least that is what we think we see.  Wishful thinking?

Anyway, back to the sorting and tidying 🙂

You make lemonade right?

We’ve been handed a few lemons from people lately, mostly by mistake.  It is hard not to want to throw is back and recoil with ‘do you really think I need more of these!?  I am the parent of a sick kid for goodness sake’

But that isn’t really the gracious thing to do.  Plus I know I have given out to others more than my fair share of lemons.  But it is hard not to want to protect fragile hearts.

We are senstive at the moment.  Packing up the house is proving difficult.  I mean, how do you pack a house you don’t even know if and when you are leaving?  We have a bunch of things listed on Trade Me and are getting rid of lots of stuff we don’t need.  But it is hard and we feel like it is fruitless work sometimes.

Finally got the Friday Funding email which was full of vagueness and disappointing.  Dec 1st is really only viable for another week, maybe 2 but then it is probably cutting it too finely to get there in time.  Stink.

We might still be here for Christmas or we might not.  But we will be right were God intends us to be, we are praying it might be Omaha.

Latest Aria fundraiser:

Baby & Child Fair, Sunday 1st November, 10-12 at Maraetai Hall, Rewa Rd, Maraetai.

 

Aria thought it was really funny to see herself on the TV.  She had this cute smile and giggled when she saw the different things she was doing.  It was a lovely piece.  You can see if HERE if you missed it.

Thanks for all the texts, phone calls and Facebook messages.   Some people have asked why Aria website wasn’t aired and right now we don’t understand why either.  Hamish and I both thought this would happen from conservations we had.  Obviously we are disappointed and unsure about what happened.

Right now we will enjoy the new site and we are still thankful that Aria’s sudden increase in yellowness was drug related and reversable not TPN related.  Phew!

So Miss Aria’s story is going to be on the telly as I write on Saturday night.  Of course we are hoping one or two new people might stop in to visit Aria’s site and maybe decide to follow our journey to get her a real chance at living a long and better life.

You can read more about Aria HERE

You can support Aria HERE

If you missed Aria on the telly you can watch it HERE

You can contact us HERE

Of course we were hoping that when the programme went to air that we might have funding for Aria’s intestinal, kidney and liver transplant.  But we do not.  We are still waiting as hard as it is.  But we leave it in God’s hands to provide the green light in his perfect timing.

Don’t you love the new site?  Thanks Dan- you’re a star

What a day!!

You might have missed my post this afternoon expressing my frustration at waiting for Aria’s funding and biopsy results and hoping today might provide answers.

I found myself asking big questions of God and wondering if He has forgotten about us yet knowing that is impossible. 

I was reading Psalm 77 in the week and the psalmist was asking lots of questions like:

Has God forgotten to be gracious?
      Has he slammed the door on his compassion?

We heard news about Aria’s liver which was good in that her sudden increase in bili is likely to be caused by the Cipro ABX she was on and should reverse itself.  Phew!! 

No email about funding though 🙁

We have been selling things on Trade Me.  We had a keyboard for sale and the buyers came to pick it up and asked why we were selling.  We said we were moving and why.  They were lovely and then the lady asked if we were Christians and we said Yes! and started to tell them about God’s goodness to us.  Turns out they were too and they asked if they could pray for us.  Of course we said yes and they both stood and prayed for us in the most amazing way. 

We are so encouraged.  God sent His people into our house to pray with us on a day we so needed it! 

Just another way God reaches out to us and says “I am still here’ every though He doesn’t need to. 

More from Psalm 77

You are the God of great wonders!
      You demonstrate your awesome power among the nations.

Channel One 8.30 AM Sunday 25th of October (set your alarm clocks!!)

Overseas people – it will be available HERE shortly after that time

Channel One 8.30 AM Sunday 25th of October (set your alarm clocks!!)

Overseas people- it will be available HERE shortly after that time

4pm update:

Liver biopsy back!  Good news!  Turns out Aria’s liver damage is likely caused by the ABX she has been on rather than TPN related damage.  So if we stop the ABX then in theory the liver should heal its self.  There is a bit of TPN damage but nothing major.  The downside is that she isn’t on ABX and she still isn’t well.   So we will have to see how she gets on.

Today is Friday.

Today we are waiting on the results for Aria’s liver biopsy AND for my Friday email from the business manager at Starship regarding progress for funding.

Two really big things to wait for.  It is hard waiting.

We could walk away from today with no news or nothing special to share.

Or we could walk away from today with BIG news good and bad.

Or something in between.

Aria and Hamish got home yesterday around lunchtime.  She had an unsettled night which was disappointing and she is a bit tired today.  And still has a rumbling temp of low 37s. 

So we wait for news, wait for Aria to get better. 

Reminds me of a line in a song we know

‘Wait on the Lord, be of good courage and he will strengthen your heart’

Strength and courage- who doesn’t need that?  We do- bucket loads of it!!

Hamish and Aria and it at hospital waiting on the word that it is ok to leave.  Kinda frustrating waste of a morning really because there is a heap to do at home.  But Aria is very grumpy about going home and not impressed that sleepovers at Star are over.  Funny, not sure the rest of the family share her enthusiasm for the place!! 

Asher is a right cling-on today, constantly within about a metre radius of me at all times.  Cute I suppose but makes it hard to get things done with a constant ‘helper’.  I do feel for him, it is unsettling only having half your family around.

Finally heard from WINZ and we will have some $$ coming in at the beginning of November.  That is a relief because Novembers mortgage payment had a question mark over it 

The US dollar is at a 15 month high at .76.  This is great news for us and even better for the decision for Aria’s funding.  Hopefully it will provide some motivation for busting out the big red rubber stamp!! 

Don’t forget Aria’s story on TV this Sunday

Channel One 8.30 AM Sunday 25th of October

Overseas people- it will be available HERE shortly after that time

Aria had her liver biopsy today.  She was a little nervous going to theatre and a bit teary.  She wanted nice cuddles from Mummy and we said some prayers with her.  Hamish took her in and was with her until they put her to sleep but she was pretty upset and asking for Doll Doll.

She did well waking up and was keen to head back upstairs.  She is a bit of a legend really, I think I would be quite scared going under a GA but she did well.  She did say when I was carrying her up to the ward ‘Aria Brave and not scared anymore’

No results until Friday but we are hoping to get home tomorrow.  The consultant stuck his head in and said that was likely.  Fortunately we have a room to ourselves because our roommate went home today.

Not sure what kind of results we want from the biopsy.  We are nervous about it and not sure what to expect.  But we trust God that He has held up her liver thus far and will continue to do so.

Bring on Omaha!!!!!