2009 May - Aria MacDonald

There is a long list of ‘stuff’ that Aria is likely to get because of her condition.  Central line infections, liver disease and gallstones are a few that spring to mind.  Turns out this week it was looking like I might have gallstones!  There was something a bit weird about me having something that we have often thought Aria might get.  Anyway $170 later on an ultrasound, there was nothing to be found.  No gallstones thankfully.

More health drama today with Asher, who broke out in a hot rash which was spreading quickly.  I phone the doctor and got an appointment within an hour.  Phew!  Took him down and turns out he has hives, most likely from a reaction to something.  I gave him a new brand of biscuits which I won’t be giving him again.  If I had read the ingredients list before I brought them I wouldn’t of parted with my cash.  Well and truly sucked in because they had a famous foursome on the box which the kids are big fans of.  Read between the lines there.

Anyway back to the gallstones.  I have been having tummy troubles for well over a year now.  Of course it has taken me this long to get to the doctor.  Funny how I rush Asher down to the Doc within an hour of him breaking out in a rash but take forever to get myself there!!  There must be a lesson in that somewhere.

Aria however is fine!  In good health and doing well which is very nice.  She was good at the doctors office and thought it was hugely funny that we were taking Asher to the Doctor just like she sees Dr E at Starship.

Aria has been dry all day today.  We are so pleased.  Although maybe I speak to soon because she is currently sleeping with her big girl undies on so I hope I get there in time to avoid a wet bed!  She is communicating when she needs to go and can go when we ask her too just before we went out.  We were out shopping for about an hour and a half and she was dry the whole time.

She of course won’t be dry at night for a very long time.  Her TPN is infused at night, about 2 litres of it and she fills a large adult diaper during the night.  Yes we use a HUGE adult diaper folded by Hamish in clever ways.  They are expensive but worth it because it is the only thing that will avoid a wet bed in the morning.

Aria is sleeping in a big girl bed now too as off this week.  She is very proud of herself and loves her new bed.  She is growing up and being a little girl, no longer a baby!!

We have lots of things to be happy about.  We have only had one infection in the past year too.  Aria last one was at the end of May 08.  Previous to that we had about 5 or 6.  We have been wrapping her Wiggle in alcohol swap and a dressing around that so it is obviously proved effective.

Did you know that this is the 300th post on Aria’s website?  You would think then that it would contain something huge and inspiring, not really actually.  I was going to post about teeth brushing and didn’t realise it was going to be the 300th post until I logged in.

Anyway.  We finally have had some teeth brushing success with Miss Aria.  I can imagine what you are all thinking- your (nearly) 3 year old doesn’t brush her teeth!?  Aria has always been very very reluctant to have things put in her mouth for her.  So as a baby we didn’t push it.  Why?  Because we didn’t want to create something called ‘oral aversion’.  This is where kids come to associate only negative experiences with something going into their mouths.  And given Aria doesn’t eat and doesn’t have pleasurable experiences (munching on chocolate for example) BUT she will one day post transplant we didn’t want to risk her not wanting to try food.

Today after a long time of playing with her tooth brush and putting toothpaste on it and not much else, she finally got some brushing action happening.  Thank goodness, her teeth got a decent clean and I am confident she will continue given my clapping and jumping up and down like an idiot which she seemed to enjoy.  She wouldn’t let me help her, unlike Asher who is quite fine for me to brush his teeth for him.  So finally she is doing it herself! 

Not much else to report around here really.  We are all good and looking forward to celebrating Aria’s birthday soon 🙂

We had a great time away.  It was so worth it.  But we are glad we didn’t go for longer because we were dying to get home to the kids!  I used to remember dreading going home after a holiday because it meant back to chores and work but this time I couldn’t wait to get home.

Aria, of course, carried on finger painting when we walked in the door.  She is so funny like that, a little bit dark that we went away so gave us the cold shoulder for a bit.  Then we got out the presents and she was happy.  Asher was very excited to see us though. 

Nana and Simon did an excellent job and Poppa too!  We are super grateful.  It was hard to leave and at times we were a bit stressed at the thought but it was the right thing to do and we are grateful for the opportunity.

With mothers day rapidly approaching both Mother Anita and my mother Christine are in for extra special mother’s day treats, and no I’m not spoiling by writing about it, they both already know.

Anita’s special Mother’s Day treat is to have a couple of days break from being a mother because Anita and I are off for a few days in Rotorua. A couple of days where she can be a ‘normal’ person without being mum 24/7.

My mum’s special Mother’s day treat is a whole weekend with her grandkids, well our two at least. Not sure even her super nana skills would want to wrangle all 5 of her grandkids.

Ok, so maybe Anita go the better of the two deals but it is really exciting for us to be able to get away for a few days. It is really our first time away together since Aria was born, its going to be interesting to see how we cope with being away from them.

We also appreciate the big effort that my mum and dad are undertaking to fill in for us while we are gone. We also appreciate that Simon has learnt our TPN routine to be able to handle that side of Aria’s care while we are gone, thanks for sharing Simon with us Josie and Violet.

Please pray for everyone who will be caring for Aria and Asher while we’re away and that there will be no dramas. Looking after a couple of toddlers is not easy at the best of times, ones with Aria’s added complications can be even more stressful.

One last thing, Happy Mothers Day to all the mums out there, its one of the toughest yet most important jobs in the world and I admire each and every one of you.

Clinic yesterday was long, mainly because I ask too many questions.  Most of which I don’t really want to hear the answer too.   Coupled with the fact that I don’t think well on my feet.  I find myself saying Yes I understand when really I don’t.  I don’t know why I do that, it annoys me cause I feel like I am not telling the truth.  But at the time I believe I understand but as I drive home have time to think and realise the conversation raised more questions than answers.

Aria was really good and let Dr E feel her tummy which was nice and soft.  Then she headed to the playroom with Asher and Rebecca and had a great time there.  Thanks Rebecca.  Most mums will tell you that having peace to have a conservation is such a gift, more so in a hospital environment.

We got some more feedback on the sodium error, some answers as to how it happened.  I thought this would help but it didn’t.  It just brought the whole ordeal crashing back.  Yuck.  And was more upset to learn final answers and a published report will be up to a year away. 

We also had a conversation about Aria’s survival post transplant.  Yuck.  Emerson is heavy on my heart at the moment, things are difficult for her post transplant.  Please pray for this little girl and her family, they are in need of a miracle and hope.

Oh- and the MRI – no answers there either.  It was normal.  So why Aria’s liver is misbehaving and her bile isn’t draining is still and may always be a mystery.

Update Phew- just had a phone call from the service manager at Starship.  Thankfully it should be another six weeks before we get answers or a final report anyway.  I am starting to realise that this issue is going to be painful and difficult regardless of how much we don’t want it to be.  I can see how it would be easy to get bitter and angry.  Which is the last thing I want to be.

Aria is so cute!!  She does the sweetest things sometimes.

Tonight I was putting Asher to bed and Aria decided to read him a book.  She got this numbers book he likes and read it to him.  It has a different numbers and pictures on each page.  She reads ‘One Doggie’ ‘Two Shoes’ etc etc and then at the end she counts or reads (not sure which one) 1- 10!!  So sweet and she holds it so he can see the pictures.

And last night, Asher was having a cry about being in bed.  He got into a bit of a state so I got him up.  Aria was still up and she called out ‘Blue Dolly’ ‘Blue Dolly for Ashie’.  Aria has two dollys Blue and Green.  Green is her fave but Blue she lends to Asher from time to time.  So I went in to her room and she gave Asher Blue Dolly to cuddle.  Tonight I was pretending to cry and being silly and she said Mummy needs Green Dolly.  Aria hugs Green whenever she is scared or sad so I guess she thinks ‘why wouldn’t everyone?’

I told her we were going to Star tomorrow to see Doctor E.   She said ‘Doc E look at Aria’s tummy’  I said yes please that would be good.  She then said ‘No Dr E cold hands’ and started to rub her hands together and blowing on them.   So funny, obviously Aria is quite fussy about the temperature of doctors hands, fair enough I would be too!

I am loathed to replace Hamish’s funny post from the other day.  Of course now I am trying to figure out why updating Aria’s website is my job because he is clearly better at it than I am !!  Oops he may have shoot himself in the foot with that one ha ha 😀

In case you missed it Sunday on TV1 had a story about Devin McQueen who received a bowel transplant in the US and was TPN free 10 days post transplant!! WOW, we are so excited about that.  Anyway my sister in law tells us Sunday is repeated at 7.10 am on Sunday mornings.  Of course she is a mum and only mums are up at that time in the morning particulary on a Sunday!!  But if you are up, watch it.

Also there is an interesting but crazy bowel transplant story line on Greys Anatomy on TV2 at the moment.  Might be interesting to watch that too, for a laugh rather than education purposes.