2009 June - Aria MacDonald

WOW!!!!

Aria had her first morning at Preschool this morning.  She had a great time doing lots of fun things like painting with toothbrushes, playing with flour and singing and dancing.  She sat on the mat and joined in with actions and singing.  She laughed and laughed doing the Hokey Tokey Dance and walking in a circle.

The other kids were pretty interested in this new little girl.  She had some new friends and recognised our friends son Toby and she sat next to him at morning tea.  Aria is a bit slower on her feet than the others and a bit smaller than the rest of the kids.  She got a little overwhelmed once with all the kids but I think it will just take some getting used to.

Aria is going to Covenant Kids Preschool in Manurewa.  Always our churches have run a preschool as part of the churches ministry to the community.  Hamish and I both when to our church preschool and now our daughter can to.  It is a big milestone in Aria’s life and we just Praise God that He has brought her this far considering what we were told at the beginning for Aria’s life expectancy!  We are so happy 😀

Devin McQueen is an amazing little boy with an amazing family.  He has had a rough ride but after receiving a bowel transplant is doing very well.  He has no TPN no central line and his Number 2s are coming out the hole God intended them to come out of!  We are so happy for him and his success gives us much hope.  His mum just wrote about clearing out the medical cupboard and filling it with toys!  How cool is that?

Some of you would of seen Devin on TVNZs Sunday programme.  As a result of that Sunday has decided to film us too and our journey before and after transplant.

After a very difficult time Emerson is being discharge to her apartment in Omaha.  This is great news after a very hard time post bowel/kidney transplant.

Our little friend Samuel is having a battle at the moment.  His little body is holding fluid and things are tough for his mum and dad watching and waiting.  Please keep them in your prayers.

Yesterday Hamish and I met a very special little man and his mum and dad.  Samuel Davy was born on the 6th of June this year with a very rare condition that impacts his kidneys, bladder, heart and intestine.  Like Aria he has kidney problems and they think he might be TPN dependant too as it is thought his intestine doesn’t go like Aria’s. 

We had a great time with them.  Well ‘great’ given the circumstances.  We had lots to talk about and we share the faith in God to sustain us and our children thru this ordeal.  We showed them photos of Aria and how she is doing and told them a bit about home TPN.  We got to see Sam and stay a bit while they did his cares and just take in this handsome little boy.

Please pray for this family, they are going thru a very tough time.

Today marks the end of Emo June.  Emo being short of emotional.  It is 3 years to the day in which we first met Helen Evans, Dr E.  It was a frank and honest meeting, along the lines of ‘this is what you are in for’.  BUT ended in Dr E saying that she and the hospital would support our decision to proceed to transplant with Aria.  YAY!!  Never will we forget that.  And never will we forget our gratefulness to her and the rest of the Gastro team.  A big thank you Dr E, you mean a great deal to our family.

My plans for today:  Kids at daycare and a whole day to myself to do nothing

God’s plan for my day today: To look after 3 kids under three and see Him provide for me.

Our nanny called in sick today and the family we do the nanny share with both had to work.  Dad’s a pilot and was called in at the last minute and Mum was already at work.  So they were in a pickle so their little girl came over for the day.

Of course I was scared and panicking about how I could cope.  June has been really busy with family staying and visiting and there hasn’t been much if any breathing space, plus a hospital admission chucked in for extra fun!  So I needed a rest come today.  BUT what I needed was to pray and rely on God and see him work. 

Half way thru the day I realised that things were going fine, all three kids went down for a sleep, were fed and watered and happy all day.  Plus my FIL showed up for the 3rd time this week to rescue me, my in laws are completely awesome if you haven’t figured that out already 😀

So this post isn’t much about Aria, although she was really good today.  But in a strange way it is.  When Hamish and I had kids we didn’t choose this hard road nor would we have put our hands up for it.  BUT we are better people for it, we see God do amazing things in very special ways. 

Often the road we want to walk down and the one God chooses for it are very different.  But today proved that His ways are better.  I feel uplifted and happy, I have done something I didn’t think I could do.  But I have in His power.  YAY Yipppeeeee

One of the many things to love about Aria is just how sweet and compassionate she is.

The other day Aria and I had been making Asher’s bottle using our big can of formula. She was helping spoon the formula in and Aria informed me it was “empty”.

Later that day Anita was going shopping and I forgot to tell Anita to get some more formula, which meant when it was time to give Asher some more bottle before his nap, there was none to give him……

When I heard this I immediately realised my mistake and felt pretty bad for poor Ashie. I was sitting with Aria and told her that I had been a silly daddy and not told mummy to get some more formula. Aria sat there for a moment looking concerned, then out of nowhere she says “No worries, buy more”. Then she gave me a hug.

It was such a sweet and thoughtful thing for her to do. Aria has been through a lot and seen some tough times, but it is great to see this is teaching her compassion and a ‘can do’ outlook.

Sometimes, just this year though, I have let my mind wander to a time when Aria will not be on TPN.  BUT never do we talk about marriage or babies until I clicked on hope today.

Read the link when you have a moment but in short it is about the a lady who received a small bowel transplant in 2002 and last christmas eve became the first small bowel transplant recipient to give birth.  WOW such hope.  This comes after a chat with my friend Debs, who is training to be a midwife, telling me about ladies in NZ having babies after having liver transplants as children.  Sorry Sam if you are reading this, I have been meaning to tell you for awhile!!

Unfortunately for Aria her condition is genetic so there is a 50% likely hood that she will pass it on to her kids.  IVF will probably be the way to go for her although I am hoping by that stage they will be able to test her eggs rather than the embryos. 

But still this gives us lots of hope that bowel transplant and liver kids can go on to lead normal lives and be parents!  That’s just awesome 😀

It was an odd admission and we are glad to be home.  Aria was pretty well all of the time. Even yesterday coming out of GA she was happy as and wandering around the hospital.

Every admission I think Aria is coping better.  She is doing better with letting Docs listen to her tummy and at the ultrasound she was a complete angel.  We are so proud of her, she copes with this huge stuff so well and takes it in her stride.  I reckon most adults, including myself, wouldn’t deal as well as she would.

And time to de-stress and relax hopefully.  Thanks for your support as always.

Today Aria has had a couple of tests.

Firstly she had an ultrasound which at times can be a bit hairy as Aria needs to lie pretty still while they slime her with goo and poke her with the wand/paddly thing. This morning however Aria handled it like the champion she is. She was excited to be heading off the ward and down stairs for some photos of her tummy as we call it. She got on the bed and quietly watched Piglets BIG Movie while the ultrasound lady did lots of soundings. She was awesome.

Shortly after that we got called down to theatre for her endoscopy. She was happy again playing in the pre-op room, running around and sorting blocks (then throwing them all around the room with Viv the pre-op nurse). She laughed as daddy got into the gowns they make you wear to go into the operating theatres and then demanded to walk into the theatre. She got most of the way there before deciding that Dad carrying her was a nicer option.

We’re waiting for the call from recovery to let us know she has woken up again. We’ve already talked to Simon our Dr this week and he says that apart from some general irriation inside the stomach, there is nothing obviously wrong. This is good  news because it means that her liver isn’t packing it in, in any hurry. He also gave us some photos of the procedure…. so now we literally have photos of Aria’s insides.

Hopefully we will be able to come home tomorrow, we just need another incident free night and to learn how to administer Aria her IV anti-acid so we can do it at home.

Hopefully our next report will have us all at home safe and sound.

…..for someone who was vomiting blood and nasty stuff.  She is in good spirits and wandering around the place pretty happily.

BUT, there is bleeding coming from somewhere in her body which caused her to have blood in her outputs.  Tomorrow she is having an endoscopy, where they put a camera down and have a look.  There is a bunch of things that could cause it.  Best case maybe her G Tube that goes into her tummy could of made a scratch or something about blood not being able to get to her liver and it going somewhere else and causing a blood vessel to burst.

Truth be told I don’t really get it and can’t be bothered trying to figure out all the different theories.  We will know more tomorrow when they go and have a look.  At least she is well.  But we can’t leave the ward because they don’t know where the bleeding is coming from so if she was to ‘spring a leak’ then we need to be handle to help.  Yikes!  Don’t like the sound of that!!!

Honestly, this completely sucks.  We just want to go to transplant and have this over with.  There just seems to be more and more complications for Aria, it sucks.

Hamish has taken Aria to Starship ED this morning 🙁

She had an unsettled night which was strange.  Then she woke up this morning saying she was hot and had a sore ear.  Phew, that’s fine (well not really but you know what I mean) it is a normal kid ear infection.  BUT THEN she started vomiting up blood clots!!!!  So action stations and she was packed and out the door.

On top of this my sister is also really sick with a vomiting bug and my mum leaves tomorrow back the OZ.  AND my cousin and his mate are staying with us for a few days but will probably find themselves on Asher babysitting duty which they seem pretty happy about.

So chaos here.  Fun times as I like to say!