Aria is doing really well.  She is so proud of her walking and ‘no hands standing’.  She likes to try to stand up without holding on to anything and she is so so proud of herself!  Aria is saying lots of words, Mummy, blue, red, Ashie, poppa, Tiv (her cousin), toast, Aunty and lots of another words that escape me right now. 

She loves her letters.  She can recognised and sound out M, D, S, T, N, P, O, J, B.  She sits on the computer and types the letters.  She loves too sit and ‘read’ the newspaper and point too all the letters she knows.  When she sees an M and yells Mummy!!  She can also read her name and the names of the rest of the family.  So cute.

It was last night and she was up late, really late.  Her bedtime is normally 6.30-7pm ish, just after Daddy finishes wiggle juice.  Except last night the bag of TPN burst and we didn’t have a spare.  Panic stations!  Not really, we just rang our excellent TPN company (wiggle juice makers) and they quickly made a new bag (it takes an hour to make one bag) and brought it around.  It meant a couple of people just getting home and then have to go back into work.

So Aria was up and playing in Aunty’s room and random decided to stand by herself and lauched herself forward and took 3 or 4 steps.  She was so proud of herself and attempted a few more times with success. 

We are so so so happy.  She has been delayed because of the hospital stays and other reasons.  The thing with Aria is that she does things when SHE wants to.  She is so determinded and smart.  Why walk when you don’t need to?  Anyway, she wants to now and we are stoked. 

Go Aria!!

For Hamish and I it was great to get out of the house and away from reality.  It was great.  Fresh air and peace and beautiful food and lovely people.  Could you ask for more?  The Jansens look great care of us and we feel very privileged.

AND we got home and Hamish’s mum had blitzed our house from top to bottom, including doing all the washing (which was heaps).  We can back to this amazing clean and tidy house, I also didn’t recognise it!!

So this weekend we got given the gift of relaxation and the gift of a tidy house.  Two HUGE things that greatly contribute to us getting back on top.  Thank you so much to the Jansens and Christine, we are blessed to have you in our lives.

Some of you will know Matisse.   She is very special to us and is awaiting bowel transplant in the US.  They had a near miss today on an organ.  They give you a call to say you might be up for transplant and they will call back later.  Can you imagine that!?  Today wasn’t the day for Matisse but hugs to the Reid family and Matisse.  It blows my mind to be living under that kinda pressure but it will be us one day soon.

Thank you for all your kind words and offers of support.  I would like to say things are rosy now but they aren’t, particulary now Asher is sick.  But this verse just popped into my head “Come to me, all you who are weary and burdened, and I will give you rest.” Matt 11:28.  Gods knows me so well, this is so what I need.

Two weeks on and Aria is doing well.  She has a bit of a cold right now but other than that she is doing pretty good.  Two weeks on and I feel like we just left hospital yesterday.  I still haven’t recovered emotionally and mentally from what was a fairly stressful admission.  Two weeks is a long time to be in hospital and Aria was really sick and we walked away with more questions than answers.

Basic household tasks seem huge.  I was fine folding washing and giving Aria a bath, now it seems like a mission.  Socialising is hard.  It seems like a huge effort to make conversation.  So of course this means I am lazy right?  And selfish for not enquiring of others?  Or maybe it is ok to just withdraw and heal for a bit? 

I don’t know, it is all confusing and hard.  I can’t decide really if I am being self indulgent or self perserving.  I can’t decide to ask for help or pretend like all is well. 

Anyway thanks for checking in on our journey.  This post is an insight into the thoughts of a parent with a chronically ill child.  I wish it was a bit more cheerful.

This is Aria and Asher being cute one day last week.  When Aria wakes up I bring in Ashie with me and Aria tells me to put Asher in the bed with her.  Aria was holding Ashie’s hand and kissing it and then kissing her Green Dolly’s hand (yes that is the name of her fave doll,  Hamish and I are that lame).  You can see in the photo Aria has beautiful dark brown eyes and Asher has these amazing blue eyes, but both have the same colour hair.

These two kids are just awesome.  Not a day goes by when I am not thankful Asher is in our life.  And not a day goes by when I am not thankful Aria is in our life.  I can’t imagine being without either of them and I hope I never have to.

It is nice being home.  Emotionally we are still drained.  I feel like I need a weeks holiday on the beach to recover.  But there is heaps to do at home, two weeks worth of washing, housework and general errands to catch up on.  No time for resting!!

Aria is back at daycare this week which she is really enjoying.  Ashie is joining her this afternoon for a couple of hours which is nice for them and me too.

There were so many kind people who did lovely things for us while we were in and when we came home.  Thanks to Poppa and Rebecca for their daily support.  Their kindness saved me really.  It is amazing who God brings into your life to carry you thru the hard times.

Interesting we are home on IV insulin, a first for Starship from what I understand.  Everyone is a bit amazed because IV insulin is mainly only done in intenstive care, not at home by two non-medical professionals.  Anyway Starship seem to believe in us and our IV skills and we are very glad they do.

 Aria’s blood sugar levels went nuts while we were in hospital because of all the stress the mystery illness was causing her system. She was started on insulin to bring those sugar levels under control.

 We will need to slowly wean her off it to see if she will be ok without it completely, whether it will be something we do while she is sick and recovering from sickness or whether it will be a full time addition to our caring routine. Hopefully it will be a once off freak thing that never happens again but with our one in a million girl, we won’t count our chickens just quite yet.

 Thanks for your prayer and support while we have been in hospital, its been a tough stay, we are all emotionally and physically spent, and know that your prayers have kept us going.

Here’s to a good period of hospital free time to help us recharge our batteries.

This post is about Hamish

Hamish has spent 13 nights in hospital and been going to work.  That blows my mind.  Simply because you get very little sleep in hospital because of antibiotics and finger pricks and obs.  Still Hamish does it and remains a nice and kind person who is adored by Miss Aria.  Miss Aria and her daddy are best mates.  Hamish loves being in hospital cause him and Aria get to spend lots of time together.  It is so cute how much Aria loves her dad and when Daddy is around Mummy doesn’t get a look in.

Hamish works really hard to keep our family sane during this time.  You might be wondering why I don’t stay some nights in hospital.  I don’t because I am still breastfeeding Asher and emotionally I am not ready to be apart from him at night just yet.  So Hamish makes this sacrifice for me and Asher and does the night shift without complaining.  Never have I heard him complain or say he is tired.

Hamish is also Aria’s best friend and mine too.  He is always there to say something comforting and helpful and will listen to me when I am sad and stressed.  He and I are a great team and have survived the stress and heartache.

Happy Fathers Day Hamish.  We love you very much ♥