2009 November - Aria MacDonald

In case you missed Hamish’s post yesterday I will leave it at the bottom of the page.

I was thankful he updated as I spent most of the evening crying and feeling pretty sick.  It has been a long time since I have felt that awful.  Two times spring to mind, Aria’s diagnosis on the 16th of June and the day we got the news of her small kidneys.

The elders  and pastors are coming over to pray for Aria at 7.15 pm today. Please, if you find the time could you pause and also do the same.

We are still planing to leave on the 1st of December.  It might come down to the wire but we will not give up.  We will do anything to fight for our girls life and for every breath until God takes her.

We have been reassured the MoH knows of Aria’s declining health and the urgency of the situation.  We are going to most likely contact our local MP to see if he can help.  Of course I really wish we lived in the Bay of Plenty who have the Health Minister Tony Ryall for their local MP!  We are not contacting the media at this stage cause that is the last thing we want to do

Our pastor came over at 10.30pm last night as soon as he got Hamish’s email requesting the above prayer for Aria.  He said, and we agree, we don’t know what God’s plan for Aria is.  But we know He is GOOD.  We have a good God who loves us and gave His son for us.  The very thing that is currently breaking our heart, the thought of losing our daughter.

Aria’s had an unsettled night.  She keeps asking to go back to Star and telling us she has a sore back.  But her temp is ok.  Not sure she will make Preschool today but we will see.  Her HB is 97 which is pretty good a nice jump up.  But her bili is 345, another big jump up hence the concern of everyone.

Please pray for us.  Your positive and encouraging comments mean a huge amount.  To know people are standing with us is God’s gift to us right now.

Well Aria is home again on antibiotics. She seems a little happier and brighter but is not particularly better. In fact her liver number continue to get worse bit by bit. After being stable for such a long time it seems like they are almost in free fall. While this is hard to hear, it is even harder to hear because today we received indications that the ministry would not be able to decide on Aria’s funding for another two to three weeks.

These two pieces of news, Aria’s deterioration and another delay in funding has hit us pretty hard. With the way Aria is declining it is increasingly urgent we get to Omaha to get a chance for Aria to have a transplant. The longer we leave it the higher the risk of things packing in before they can be replaced.

It’s really hard to understand what God is doing with us and Aria. We decided a long time ago that Aria’s life was God’s to do as he wished, but as we have come this far it is really daunting to think that God may decide he wants her home now. We’re still hopeful and confident that God is taking us to transplant and will give Aria a new lease on life, but he’s making this journey a huge challenge for us.

As we were taking Aria home from hospital this afternoon, just after we received these pieces of news, we received some comfort from a bible story that came to mind. We were talking about how we must believe that God is doing something special through Aria’s life and bringing glory to His name. Then we talked about the story of the destruction of Jericho. God could of knocked Jericho flat the moment the Israelites got there, he could of allowed the Israelites to conquer it through normal military means but he didn’t. God got his people to walk around those walls for a week blowing their trumpets before finally at his appointed time, the trumpets blew, the walls fell down and God’s purposes were accomplished.

Now we can look at this story with reassurance that God has a plan, and He has a timing and method to see that plan come to fruition. We as his people, submitting to His superior wisdom, must walk with trust in the ways he leads till the moment he acts and we can seize on the moment. That’s why this post is called “Round and round the walls we go..” We’re just waiting for that final trumpet blast so we can carry out the next step of God’s plan for our family.

Prayers are really appreciated, please pray that the Ministry of Health can make things happen much quicker than expected so we can still swing a December 1st departure date, after all with God all things are possible.

Hamish and Aria had a slight better night.  Miss was still awake a lot but Hamish said she was less ‘yelly’ and she slept until 7am which she hasn’t done for ages.  So we are encouraged that things are improving.

Hamish and Aria will come home for a bit and we will go back in to Star for consultant rounds.  Hopefully maybe one more night and we can go home on ABX.

Facebookers- My friend Lou who is an amazing photographer is running a very clever fundraiser for Aria. 

Please join the Facebook group and join in!

Thanks for your support and comments 🙂

The raffle winners ARE:

Baby Baby Product Hamper – Chris #34
Breastfeeding Pillow – Joanne E #127
Sticky Tiki wall art – Karin Vince #66
Wine Cooler bag with bubbly – Josie & Simon Wall #001
2 x Freshwater Pearl necklace and earring sets – Joanna E #122 & Julie #30
Avon Anew face lifting cream and scarf – Judith Peters #86

Congrats Everyone!!  And thanks Sam for doing this!!

Aria’s temps have been pretty good today.  Highest 37.3 rather than 37.8 like normal.  She is having some albinum and ironically her sodium is low!  Praying that Ham has a better night with her than I did.  So hoping this is Aria improving.  Hamish has been in today and he said that she has been pretty perky so that is nice. 

Maybe Aria will get home for a few hours tomorrow before we both head back in for Consultant Rounds.  Poor Hamish has a dentist appointment tomorrow (the MacDonald’s aren’t dentist fans so he is a bit nervous).

This verse keeps going thru my mind because today has been very shaky

Psalm 62:6 

 ⁶ He alone is my rock and my salvation;
       he is my fortress, I will not be shaken.

….late December back in ’63”

No not really, have I lost my mind?  Quite possibly

Aria and I had a terrible night.  She has been having bad nights for about a week and last night was no different.  Except there wasn’t two of us to tag team during the night, just me, waking every hour to her yelling and wanting to get up.

It is really hard.  I don’t sense she is in pain but she can’t sleep and is coughing and vomiting.  And just restless and unsettled.  Because she can’t sleep she wants to get up and watch telly and go for a walk.  Every hour I get up and bribe, threaten, coax and soothe in a vain attempt to buy another hours sleep.  Honestly, it is a true test of patience to keep your cool with a grumpy demanding three year old in the middle of the night.

Finally at 6am I turned on the telly and hoped she would watch it and I could get more sleep.  Forget it, ten mins of watching telly and she is yelling for a walk.

I feel desperately bad for her because the real Aria sleeps soundly thru the night and it generally a happy girl.  This current version is a mystery to me.  We are torn by being tired and frustrated with her behaviour and really sad about how she is being robbed of a happy carefree life.

We have started ABX and she had a blood transfusion last night after her HB came back at 56.

Hamish just rang and he has spoken with the Docs.  Basically they are not sure what to do.  There is an infection in her gut BUT there is no way to really get the ABX in there cause her gut doesn’t move.  And the liver damage is likely infection because of the guts bugs flowing back into the liver.  And the dropping HB is related to the infection in her gut and liver.

The only real thing that will fix this problem is a transplant.

It is really hard watching her suffer and struggle and there is nothing that really can be done except ‘hoping’ the ABX work and ‘hoping’ it is the right one.

Aria will die without a transplant, I am really understanding this more and more each day.  Please God- how long?  Bring your peace to us please.

Anyway- your prayers are greatly needed.

9 to 5 is the amount of time it took for Aria and Anita to get through ED and into a ward today. Well actually it was a little longer than that but then it wouldn’t be as catchy. ED as always was very challenging and Anita did a great job of hanging tough and keeping sane.

We decided to take Aria back in today because she just wasn’t doing that well. Her murmuring temperatures were becoming more of a grumble and her nights were terrible. She was awake at about 3am each night wanting to get up, obviously tired but feeling like rubbish and unable to sleep. We also suspected that her blood count had plummeted again as she had stopped walking again.

Her blood count was confirmed as being low again (66) and her liver numbers are still bad (high 200’s). They have transfused more blood tonight and have also started her on antibiotics, hopefully one that will be helpful not harmful this time.

Hopefully we can get her right so she is well and ready to go, just in case we get any big news this week.

Please pray she makes a genuine and last improvement from this admission.

As always we appreciate all your prayer and support.

Big cousin Tivoli is staying the night tonight and you would think there is a rock star in the house.  Aria and Asher love having their big cousin over.  Aria calls him Tivvy.  Ashie follows him around and laughs and laughs.  And Aria has been giggling for the first time in ages.  Just quietly I think Hamish really likes having someone to play PS with too.

This week has been a true rollarcoaster of emotions.  One day faith is strong and other days our true humanness really shows.

We have one more week to receive the green light for funding.  And that is pushing it.  Got the Friday update today and everything is sorted with the application and the MoH just really need to say Yes or No.  So hopefully this week might be the week.  Prayers please!!!

Scary to think we may actually only have two weeks to pack up and get on a plane!!  Yikes!!  We have sold plenty of stuff on TM and biffed out lots of stuff today which was hard.

So, we wait.  I am reading a book called Elijah by A W Pink at the moment.  The title of the chapter I am up to:  The Lord will Provide.

He Will- watch this space 😉

Thanks to everyone who supported the raffle in the last post.  The draw is on the weekend and Sam will contact you and I will post the winner here too.

I just sat down and have completely forgotten what I was going to post about!!  That is probably because I am sitting in complete chaos.

We have been going thru each room and sorting every single item.  Hamish, thankfully, is the master at such things.  I just look at it and get overwhelmed and want to cry with all the stuff we have.  He organises it into piles being Keep and Throw Out.   Legend.   I come back and the floor is empty and there are two piles.  Awesome.

Had a nice chat with Sam’s mum Shirley last night.  So completely amazing Sam is home consider how desperate things were for him at the start.  I remember being overwhelmed (sensing a theme?) with just doing TPN and one med for Aria.  The Davy’s do TPN, milk feed into his tum (not quite but I forget the letter combo GJ? JG? NG?) and oxygen and 5 meds! Wow, those are some dedicated and amazing parents.

Less wondrous is the current state of Aria’s health.  She is still spiking little temps and is waking from 4am wanting to get up and unable to sleep.  Sounds familiar.  Then at 6am she see the sun come up and that’s it- time to get up!!  Joy.  It’s really hard to know what to do.  No point taking her in to hospital for a temp of 37.4 but it isn’t easy knowing she isn’t well.  And how much we encourage her to keep on with daily activities.

We will keep praying, God can and does do miracles, just look at Sam 🙂

What a busy weekend.  Lots on which is a good thing I suppose to keep busy.

Sunday was a the Baby Fair which was a great success.  About $500 was raised for Aria plus I had a table to sell off my baby stuff and made about $100.   There were lots of ladies who hired tables to contribute to the amount raised so they would of made some $$ for themselves too which is great.  It was a win/win fundraiser, great stuff.

Sam, Lara’s mum did a great job to organise it all and her playgroup helped with morning tea for a gold coin.  Thanks Sam and everyone!

There is still a raffle going on.  If you know an expectant mum or want to have the opportunity to gift her an awesome present I have some numbers to sell for only $1 each!!!!  Thank Jodee for donating some of the the excellent prizes

Pack contains:

Baby Baby breastfeeding pillow (I have one and it was hugely helpful particulary learning to BF)

Lots of Baby Baby goodies for baby (I have used these too, beautiful natural stuff for babies)

Sticky Tiki graphics for baby’s bedroom wall- very cool Elephants

Freshwater pearl necklace and earrings.

Bottle of bubbly.

Some other stuff I can’t remember!!!  Sam- can you comment?

Please contact me and choose your number, facebook email or leave a comment

Numbers to sell

71 72 73 74

77 78 78 80

81 82 83 84

87 88 89 90

These numbers- sold to Cath!!

One number = $1 = one opportunity to win

There are more available please leave a comment if you don’t mind being allocated a number 🙂

Please deposit funds into Aria’s Trust bank details HERE