2009 April - Aria MacDonald

We’ve just finished dinner here at the MacDonald house and Anita is busy chasing the kids around the house like a maniac, not for any particular reason but just because its fun and she’s a good mummy.

During dinner a little hand kept creeping over to my plate to steal my food. A mushroom, some chicken, capsicum and potatos all disappeared from my plate and mysteriously appeared on Aria’s plate. Aria eats all our meals with us and really enjoys her times at the dinner table. She sits there biting little bits off whatever it is we have to eat, and then subtly spits it out onto her plater (ideally) or more often onto the floor, or her seat, or her clothes, or into my hand so I can share the experience. She especially likes to eat Apples, she can turn half an apple into apple chunks with an amazing efficiency.

An episode which happened during our last admission (before the ‘EPISODE’) got me thinking about Aria’s attitude to food. I was going to Tiny Bites, the little cafe place in Starship to get some lunch, I was picking something from the cool cabinet when Aria says “Aria, sandwich please”. I spent a few minutes trying to persuade her that she could share mine, but no Aria wanted her own sandwich. It happens quite often, any time we buy food with her, she sits there picking out what she wants to eat. She loves her food as much as any little person I know.

From time to time people will see Aria with a handful of food and you can see the confusion come over there face…. “I thought she doesn’t eat?” ….we explain while not much if anything goes into her tummy, she really loves to be part of the food experience and do her very messy taste testing.

Hopefully one day in the not too distant future we’ll be able to go past the social aspects of dining with Aria and onto the actual eating experience. In the meantime we’ll keep encouraging Aria’s love affair with food, and keep on considering getting a house pig to clean up the messes Aria and Asher leave for us.

I better go now, Anita has nearly succeeded in teaching Aria to say “Stop, Hammer Time” and I need to stop the madness.

…went really well.  Not that we have gotten any results but Aria did well.  She went under a GA while they put her thru the MRI machine.  Asher, Hamish and I went for a walk while they ‘took photos of her tummy’.

Funny, while we were walking thru Auckland Hospital we jumped into the elevator with Asher in the pram.  An old man said that Asher was a handsome boy and asked us if he was sick.  We said no and smiled and got off at the next floor.  Would of been strange to say “no he is fine but our daughter is currently receiving her 10th+ (?? I’ve lost count) GA and is having a MRI at the University because her bowel doesn’t go, her kidneys are small and her liver is currently being dodgy”  Too much detail for a elevator chat?  Perhaps

Anyway, back at the Uni Aria came out of her GA just fine and was a happy chap for the rest of the day.  In fact it was hard to believe she had been thru a procedure just that morning when we went to visit Nana this arvo.  Nana is currently laid up in bed mending from an operation on her leg last week.  Aria got really sad when I told her Nana had a sore leg that I almost regretted telling her on Sunday when we visited.  But she was ok today.  I guess Aria understands more than most what it is like to be sore.

YAY Emerson got her transplant.  So excited for her.  Emerson WAS needing a kidney/bowel etc like Aria so we are particulary interested in her case.  Gosh I sound like a doctor.  Anyway so great for her cause she had only been listed 13 days!  I hope our wait is a similar time too.  Sorry Jodee,  I think of you and Matisse as I write.  There is a long road ahead for Emerson, so our prayers are with her.

Aria is doing good.  Her liver numbers are up!  BOO. Did I post about that already?  I can’t remember.  Her bili is 48, which is a shame cause it was right down to 20 I think.  We got a new date for an MRI, next week, short notice!  Thankfully Hamish has the day off AGAIN, yay for F & P!!

So we got a call on my cellphone on the way in to say that Aria’s MRI had been cancelled. Not surprising really, there were 5 emergency cases after the long weekend. So hopefully another one will be scheduled before clinic on the 5th of May. Apparently they want to do it at the University or something. I couldn’t hear very well because we were on the motorway and the lady talked the whole time and didn’t give me a chance to ask questions. I figured she did want me to be grumpy with her for cancelling it, not that I was particulary.

The Zoo was good though, although Asher’s highlight were the seagulls and the chickens. Strange boy. Aria liked the chimps and the giraffes.

Yesterday didn’t end well for me, spent about 3 hours saying Hi to the loo in interesting ways. Yuck, of course I feel like I have been hit by a train this morning. Hamish was almost going to stay home but I think I can manage. The kids are being good although both found some food in the nappy bag and want me to open it. Aria was asking for a ‘sandwich please mummy’ just before. Anyway I think my sickness last night is stress related. I have felt constantly uptight and haven’t had much rest for awhile, even after the long weekend. Need to Chillax I think!

Tomorrow we are off to the Zoo (thanks to a free family pass from the KIDS foundation) and in the afternoon we are going to Starship for an MRI (under GA) for Aria.   Aria is really really excited about the Zoo and excited for Asher. 
When I told her today we were off to ‘Star’ after the Zoo and she said ‘Asher Head Sore’.  And asked her if we were going for Asher and she said Yup!  Asher had an argument with the driveway on Friday and has two scratches on his head and one on his nose.  Funny she understands the concept of hospital and I guess thinks that Asher is the one in need of help not her. 

Today we went to a friend’s 30th brunch.  Hamish was working so my good friend Louise, who was going too, came and helped me with the kids. Thanks Louise!!  Aria did really really well and was such a good girl   She has been really shy since getting out of hospital and it was wonderful to see her opening up and laughing with others.  Her walking came on heaps watching the other kids and she even climbed up a flight of stairs!  She was so happy and sociable and sat on the couch watching Vegie Tales with Louise when we got home.   And all afternoon she was laughing and walking around the house no problems.

Christ is Risen!  Death has been conquered!

We sung this song today at church.  Wonderful truths there today on Easter Sunday.  These words are the reason we get thru each day, living in hope, that death has been conquered and overcome so we too can overcome anything and everything.

Aria is back on her feet and doing pretty well.  She is walking like she did when she first started but she is pretty proud of herself, as she should be.  She is back riding Scootie too which is funny.

Aria does not seem at all fussed about the fact she isn’t walking.  In fact she is gone right back to bottom shuffling!  She used to do this a lot back at our old place that was mostly wooden flooring.  Then she started to stand and then went to crawling and then finally walking.  Her good friend Scootie was always a great way to get places fast.  She would sit on Scootie and hoon around.

As you can probably tell I am a bit anxious about it but have decided to move on and realise Aria will do it in her own time.  Yes I still haven’t figured that out yet!!  She did walk all around the table yesterday holding on to the seats.

We are still in recovery mode here.  It is taking awhile.  I was watching TV last night and suddenly there were images in my head of Aria’s coding and the events that followed.  Perhaps I might never forget her eyes rolling back and her lips going red then blue.  Or the sound of people running in the room or the sound of the emergency buzzer on the ward or the look of concern on the consultants face or the feeling of not understanding what had happened.  Perhaps it will always invoke waves of emotion and pain.  Anyway I look forward to reading the report and moving on.  We really want to move on.

I am pleased to say that this issue is over!!!!  😀

That was one of the best things to come out of the past admission.  It must of been brewing for awhile.  But since the first day Aria was admitted and the surgeons did their thing there has been no more pukes.  As a result Aria is sleeping better and much happier. 

In herself she seems very happy and laughing a lot.  You should of seen her at 9.30 last night!  Yes she was so happy and laughing to herself in her cot that we got her up.  Flawed logic I supposed but we had a really nice time with her.  In saying that I hope she doesn’t plan to do this every night!!

My next trick today is to get her into the bath, I hate to think when the last time she had a bath was.  Aria hates the bath and there is always tears.  But Nana is over today so she can give me a hand, lucky Nana.

Aria is on her feet!  Phew!  You can all laugh at me for being so paraniod 😀

She is walking with one of us holding her hand and this morning she is walking while pushing her dolly pram.  Not for long and she does get tired but she is trying so that is the main thing.

Both kids have been quite unsettled since hospital and last night Hamish and I got our first full nights sleep.  We feel heaps better for it. 

Today we went back to church.  We had missed a few sundays because of illness.  Our church has a drum kit now so church was pretty rocking this morning.  It was cute seeing Asher dancing to the songs.  We sang that song ‘this is the day that the Lord has made’.  I was reflecting on whether I could honestly say that about the day Aria coded and was taken down to ICU.  Still it is helpful to remember He purposes all things and nothing surprises him.

I haven’t felt this way for a long time.  When we were first discharged and home after Aria was born and felt like such a freak.  I felt no one understood my pain and I was alone.  I couldn’t join in with conversations the other mums had and just wanted to talk about my hospital experience.

I feel a touch that way right now trying to get back into life and be normal again.  I feel like this huge massive event has happened and I can’t shake it off.  I am incapable of making small talk when just last week my daughter was close to something not worth thinking about.  The words Near Miss echo in my head daily.  Thankfully I have kind friends who ask and are interested and will share the hard parts of their lives with me so I don’t feel so alone!  Phew although I feel bad I like to hear their struggles, confused because I would love something different for them all and hopeful I might be able to offer words that point to God.

Aria isn’t on her feet yet and I am trying hard not to get upset about it.  I hope we are not back at square one again with her walking.  I think she has lost muscle tone and confidence because she cries and looked scared when I encourage her to walk.   We are so ready to go to transplant, bring it on!  Someday I pray this will all be a distant memory.