2009 February - Aria MacDonald

Like all Kiwi kids Aria LOVES Marmite.  For morning tea yesterday she asked for ‘Toast’ and I asked her what she wanted on it and she said Marmite.  She always says Marmite.  She sticks her finger in it and licks her finger.  I guess if she actually ate then that behaviour wouldn’t be ok but I am quite happy for her to taste and experiment.

Her new fave job is to bath Asher.  Poor Asher.  When he woke up from his nap today Aria said Asher! Bath!  Sorry Aria, he doesn’t need a bath.  And her fave new word is ‘Team work’ or is that two?

Unfortunately she is going through the dramatic stage.  She drops something she crys, she lands on her bum she crys.  Sigh.  Still she is pretty good and lots of fun.

Do you remember Fear Factor?  That awful programme in which the contestants have to eat gross things and lie in bugs?  I think there is a NZ version coming, which made me think more about my ponderings over the past week.  Update: it is the NZ version Who Dares Wins not Fear Factor, but the same idea.

I have become increasingly aware of the grip the fear has on my life and Aria’s life.  This all started that Monday when I watched that programme about Staph.  By watching it I fed my knowledge and gave the spirit of fear more ‘ammo’ in which to grip my life.  I am thinking of fear differently now.  Not as something that I am passive too and trapped by but something that I won’t let master me and bring me down.

There is a huge list of stuff to fear which could make Aria’s life very bad very quickly, which as a mum is hard to deal with sometimes.  Recently dialysis was added to the list.  Yuck, three times a week trekking into Starship for hours at the time.  Going overseas to a new country and putting Aria though a hard and difficult operation which has huge risk- Yuck!  Not to mention bugs, drugs, staph, her liver function, development etc etc

Anyway I will not let fear be a factor in my life.  I will not let it ‘get’ me because it seeks to destory and bring me down and ultimately make me less effective as a mother, wife and friend.  I say this and claim this but really it is not about me ‘deciding’ to be a certain way or positive thinking but God working out something amazing in me.  Really I would just worry 23 out of 24 hours of the day if it was up to me!!!

http://www.fundraiseonline.co.nz:80/BruceLevi/

Aria’s Uncle Bruce is doing a half marathon and raising $ for Aria.  Go Uncle Bruce!!!  Stop by and support him, such a great idea.

We had clinic yesterday and that was interesting.  We brought Rebecca with us which was fab because we actually got to talk to Dr E and hear what she said without having to entertain two children.  Anyway a mixed bag of stuff.   We are off to transplant hopefully this year which is ‘good’ news but Aria’s kidneys are starting to struggle and it was the first time we have heard the word ‘dialysis’.  This would be a bad development in her health and we are praying we can avoid this.

http://www.fundraiseonline.co.nz:80/BruceLevi/

Aria’s Uncle Bruce is doing a half marathon and raising $ for Aria.  Go Uncle Bruce!!!  Stop by and support him, such a great idea.

We had clinic yesterday and that was interesting.  We brought Rebecca with us which was fab because we actually got to talk to Dr E and hear what she said without having to entertain two children.  Anyway a mixed bag of stuff.   We are off to transplant hopefully this year which is ‘good’ news but Aria’s kidneys are starting to struggle and it was the first time we have heard the word ‘dialysis’.  This would be a bad development in her health and we are praying we can avoid this.

Aria is currently walking around the house saying Aria! Brave!  And it is true she is!

Saturday morning is bath and wiggle dressing change.  Both events have been filled with noise and tears and today those tears were gone and the event was happy.  Aria doesn’t like having her hair washed because she doesn’t like water on her face and her hates wiggle dressing change because it is ‘ouchie’.

But today she was so proud of herself for not crying and yelling and we didn’t even have to hold her down.  She put her arm in the air and sat up nicely.  Previously I was able to hear her crying on the 6th floor of Starship when I was standing at the Cafe downstairs on the 3rd floor when she had her dressing changed.

Not sure what the change is.  But she is really happy and clapping and listing off the names of people she is going to tell about how brave she is.  We are so proud of her!

Aria is currently walking around the house saying Aria! Brave!  And it is true she is!

Saturday morning is bath and wiggle dressing change.  Both events have been filled with noise and tears and today those tears were gone and the event was happy.  Aria doesn’t like having her hair washed because she doesn’t like water on her face and her hates wiggle dressing change because it is ‘ouchie’.

But today she was so proud of herself for not crying and yelling and we didn’t even have to hold her down.  She put her arm in the air and sat up nicely.  Previously you could hear her crying on the 6th floor of Starship when I standing at the Cafe downstairs on the 3rd floor when she would have her dressing changed.

Not sure what the change is.  But she is really happy and clapping and listing off the names of people she is going to tell about how brave she is.  We are so proud of her!

Well we have been without the internet for a couple of (hard) days!  So this post is late but I still feel like I should post about our day on Monday

Aria had an appointment for a kidney test on Monday morning.  Josie came with us and minded Asher for the hour it was supposed to take.  I rang a couple of days before to check how long it would take and they said only an hour.  BUT when I got there and sat down with the Doctor he told me they were doing another one which required a blood test in two hours and then 2 more on the hour for next two hours!  Finishing at 3.05pm!!  ARGH! 

What was I supposed to do inbetween time with two kids!?  Plus Josie came in our car and she had to be back for a important appointment with her midwife and her hubby was at home with a migrane.  PLUS I had two interviews scheduled because we are looking for a nanny with another family, the Bakers.  There was no room in daystay or on the ward. 

So putting my thinking cap on I decided the best thing to do was to go home and do the bloods myself.  Of course this involved me doing them at the Bakers house and they had to done right on the dot of 2.05pm and 3.05pm and of course the nannies were coming at 2pm and 3pm.  Taking bloods off Aria’s line isn’t easy and you have to be really careful.  But she was really good and the Bakers were supportive and Nana Mac came on the drive back to the hospital to entertain the tired grumpy kids (no time for naps)

So it was an awful day.  And about to get worse when, against my husbands advice I decided to watch 60 Minutes.  I was curious.  But it was about a little girl, Ava, who got sick with croup and then the dreaded staphylococcus aureus got into her body and robbed her of nearly her life but ultimately her legs and right hand.  Aria has been sick with Staph Aureus 4 times and has lost one central line because of this bug.  Of course I sat on the couch and cried and cried for this little girl and her mum and dad and for Aria and for the future.  This surprised me because I don’t normally cry at that kinda stuff.  I keep that door firmly shut but i guess because of the awful stressful day I just had to let it all out. 

Staph Aureus is a horrible bug and I was just gutted it had damaged Ava, who was perfectly healthy.  Aria started off life unhealthy but this little girl was a picture of health and it ‘got’ her.  And it gets Aria and I never knew it could take arms and legs.  I do now and I wish I didn’t but I won’t life in fear.

It has been awhile since we updated Aria’s site.  Not sure why- I guess we have been busy.

Aria is still a bit yellow which is a shame.  Her liver numbers aren’t really improving.  Good news is that Dr E doesn’t think it is liver failure related rather a blockage.  We are hoping that is the case too.

There have been on hospital admissions in ’09!  Yay!  Strangely, and based on no hard evidence, we ‘feel’ one coming.  I guess you come to expect it.  I went and did this really geeky thing in excel, colour coding all Aria’s admissions in a calendar format.  Want to hear something spooky?!  Aria in hospital for 60 days in 2007 AND exactly 60 in 2008!