News - Aria MacDonald

Been going over in my head as to whether I was going to blog about this.

This week has been pretty busy.  The grandparents left and there was lots more emotion associated to that than I thought there would be.  We have been having problems with Aria’s heartrate and O2 stat machine not reading correctly.  Lots of frustrating phone calls later we are hoping for a solution tomorrow.  Aria has been spike little temps too around 37.4-37.8.  38 is the magic number, if she hits that we have to call the hospital She has periods of great behaviour and periods were she seems unhappy and demanding.  It’s a challenge.

Today I made a decision for me, to attend a meeting to do something that needs to be done.  I left Hamish with the kids this morning and walked to the car.  I had left it unlocked last night.  Do you remember me saying Hamish and I have been doing stupid things with keys and carseats.  Last night was my turn.  Needless to say my heart sank when I saw our stereo face plate gone and it sank further when I opened the glove box and saw my very handy GPS gone  I am from South Auckland, I should know better.  Despite it’s reputation, this is only the 2nd time I have been a victim of crime.  Manurewa 1 Omaha 1

I decided not to go to my meeting and went upstairs for a cry, along the lines of ‘we are parents of a sick kid- who would steal from us’ and ‘how could I be so stupid’  Of course it wasn’t personal and whoever these people are they are we gonna love them like Jesus does. Threw away the tissues and went to play with the kiddies.  Aria had perked up and along with Asher we had some nice laughs.

There was still time to make the next meeting so I left again.  Where was I going?  No not AA.  WW actually.  There is nothing like putting it all out there too 500+ people to help you commit to something!

I was SO NERVOUS.  I shouldn’t of been.  One of the many things I love about Americans is that they are so expressive, warm and friendly.  Made for a very interesting meeting, lots of talking and tips and I sat there totally interested.  Later the leader had a little private session with me and the other newbie.  I spent 2 hours there!  Walked out feeling so positive.  The other newbie there asked me were I was from.  Turns out her brother lives in Whangerei.  The leader (who has Crohns) ask my why I was in the US.  She so was kind and hugged me and insisted I take two big WW guides and a points calculator as a gift from WW!!!  So very generous.

So yes, this is a personal blog not much about Aria but about our journey.  God so often shines His light in the darkness thru the actions of others.  Like the donut lady across the road who gives us boxes of donuts and the cashier at the hospital gave Aria her pink and purple nail polishes she hadn’t used that much.  Yeah there are some people who pinch your stuff and hurt your feelings but there are others who are super awesome.

AND Aria didn’t have a temp today and was lovely and happy all day.  Sweet girl.

God is good.

Watch a clip of the kiddies

My kids love their grandparents.  We will be sad to see them go.  How about the perfection of God’s timing in allowing them to be here for our transition home?

Can you see the smile on Aria’s face?  She smiles all the time now for the camera.  We can see her health improving everyday!

Thanks to Bob and Christine for making the sacrifice to come.  And my sister too.  It isn’t easy coming into this crazy life that we have been called to lead.   Not sure when the next time will be that we will see them but thanking God for his provision!

More photos added to Facebook

It is Saturday morning here and two more days until the grandparents leave.  Yikes!

Aria is having a lunchtime nap.  She was pretty grumpy this morning so we put her down for a nap and she was sleep in minutes.

Good news is that our nights are greatly improved.  I only had to get up once last night.  Mine you it did involve topping up the feed pump, stripping the bed, changing Aria’s PJs and nappy and suctioning her.  That’s that fine though.

We got a call from Make A Wish yesterday!  How exciting!  They are coming to the house next week to talk to us about Aria’s wish and do the paper work.  At this stage it is looking like a trip to Disneyworld in Florida and staying at Give Kids the World.  I think Aria would love a family vacation and because we are coming home wishing for a certain item isn’t probably not the best idea.  Still they will come and talk with her and us and see what she would like.  All of this is pending Aria’s health and permission from her docs of course.  I just can’t believe we might have the opportunity to do this thanks to TWO amazing organisations!  Completely cool.

I am currently home alone with both kids, kinda weird.  Then I remember this used to be my full time job!  I think I am outta practice so glad one of them is sleeping!  Better go!

Another quick update for today, it is late here and we are all a bit tired.

Clinic went well.  Not half as fun as clinic with Dr E but still good.  We had lots of visitors, one of the nurse practitioners from PICU made a special visit down to clinic to see how Aria was doing.  One of Aria’s PICU nurses was floated down to help with clinic and we were really happy to see her, kinda like seeing an old friend or something like that.

Good news is Aria’s kidney and liver numbers are on the higher end of normal.  ”We’ll take it!” I said to the Doc.  Considering she was on dialysis 4 weeks ago and bronze like a statue 3 months ago it is all good news.  As of Monday she is no longer even on a med to help her pee- how amazing is that?  Bloods once a week!  yay!  Her white blood count is strangely high at 33 which is a lot higher than normal, no great answer for that.  Still battling a rash and allergic reaction to something- not sure what that ’something’ is.  Mmmm But all and all they are happy with her and we will be back in a week.

The GI doc we saw today said it was a real privilege to be the one to see her at her first clinic.  Everyone is so happy.

Next was PT and OT.  Pretty much a disaster.  Hamish, Nana me and Ashie had to leave it was so bad.  She just refused to do anything and threw herself on the floor.  Bizarre!!!!!  This is NOT the Aria I know. still they just practised getting to from lying to sitting, she wasn’t getting away with doing nothing.  We have some behavioural issues to deal with with our Miss Aria, it is going to be hard work.  Plus her tired body wants none of this.  BUT we have to work those bones and muscles- she has been sitting around so long a fracture could be next on the list of things to deal with.  Sigh, Poor Sweeties.

Sleepful is not a word, but it is for this post.

Just wanted to quickly update to say Aria only woke ONCE last night at 5am!  No Alarms, only suctioned once cause we thought we should.  She settled back to sleep quickly too after we got what she needed.

She didn’t pull any of her dressings off cause she safety pinned her nightie together- totally did the trick.

Thanks for praying and thanks for the advice.  Not sure why or how she managed to sleep thru the night but hoping it continues.  Thank you!

Since Aria has been home sleep as been at a premium in this house.  Last night she managed to pull of her stoma bag and wound dressing THREE TIMES!!!  Messes each time to clean up in the middle of the night.  Bribes, threats and discipline did nothing.  She is determinded.

Unfortunately at night she has no voice to call us and I think she finds that hard.  So she acts out to get our attention not realising pulling off her stuff doesn’t wake us up.  The other thing she does is put her oxgyen on her head so her O2 stats drop, the machine alarms and thus we come running 2am, 4am, 6am etc etc.  She used to pull off her toe probe but now that is taped to her toe and a sock is taped over that.

UPDATE- I should of said we have tried a bell.  She rang it constantly all night.  Our aim is to train her to sleep thru the night and settle herself back to sleep and mum and dad need sleep too.  It is a very tricky balance of attenting to her needs and training her to her new environment.

So we have raided Target today for safety pins and outfits to ensure she can’t access her tummy.  Still don’t have a plan for keep her o2 on her trach and not her head but we are working on it.

Basically she isn’t sleeping.  This morning I put her back to bed at 8am and Hamish took the big suitcases under his eyes back to bed too.  The TV was on, Asher was yelling, Nana and Poppa talking, the dishwasher on AND the door to her room was open just metres (yards) away from all this action AND SHE SLEPT like a ROCK until she was woken at 11am by the nurse visiting.  Seems like Aria is used to the hussle and bussle of the PICU and is needing to readjust to a quiet house at night.

I feel guilty I am not bouncing off the walls with excitement that Aria is home.  Life is difficult I guess looking after a high needs little girl, constantly watching for signs she is sick and making sure supplies are ordered etc etc, doing meds, travelling to appointments etc etc.  My mind goes constantly running thru everything.  Both Hamish and I keep doing stupid things, mainly involving carseats mix ups and keys.  That’s what happens when your mind races.  But the Aria IS HOME and there is A LOT to be thankful for and I am but…….

The crazy thing is Christine is here doing most of the housework, tidying washing etc.  There are meals to cook and organise but the reality is we aren’t even doing all the household stuff and we still aren’t managing so great.  Mmmm.

Over all of this is the sadness and pain from what we have experienced the past 9 months.  Sadness/happiness at what Aria was and who she is now and vise versa.  The work that needs to be done.  Those  big questions at 3am when you are awake.  What happens now? When will we get back to NZ? And other thoughts like relationships that need to be mended and pain over sacrifices we have made to be here like my sisters wedding I am unlikely to be able to attend.   Sadness and healing that needs to take place.

I know- it is one of those blogs.  Perhaps you are thinking- that’s nice- wheres the pics of Aria?  We will post a happy pic filled post and update you all on her clinic appointment, first one tomorrow with the surgeons!

We tripped in to UNMC for the first time since discharge.  It was for a Physical Therapy (PT) session.  Aria’s least favourite thing too do.  Oddly enough it is also mine.

This morning the nurse came to the apartment to draw bloods.  Also a fairly vile experience.  Aria is SO BRAVE!  They have to use a needle to find a vein to draw the blood.  She holds out her hand to the nurse and says ouch ouch but doesn’t fight or kick or anything like that.  Super brave.

PT and feeding therapy are two things everyone else is keen about but I couldn’t give a monkeys about.  Why?  Cause Aria doesn’t.   Aria doesn’t care that she doesn’t walk and it quite happy not eating.  And we are happy cause she isn’t on TPN anymore that was destroying her liver. She is on her nose noodle juice.  Boring old formula going straight into her brand new bowel and she is doing quite nicely thanks.  Despite what the front page of the Manukau Courier might report she isn’t eating, rather tasting foods and we are ok with that.

We have to choose if we want to do mean feed therapy or nice feeding therapy.  Errrrr- think we will choose the nice one, this poor girl has been thru enough!  Feeding therapy is where they teach kids to eat.

Back to PT.  Aria had a fairly wonderful meltdown and pretty much refused to do anything.  I sat there almost crying cause they wanted her to do things she really really didn’t want to do.  Aria is so weak, it is so disappointing that all the effort we put into her walking is gone and we have to start again.  I feel so bad for her.

The PT lady sat Aria on her knee and got Aria to reach forward and down to pick up some balls on the floor.  She said “Aria, reach down and pick up the purple ball”  Guess what I did??  I reached down and picked up the ball FOR ARIA and handed it to her!  DUH- so NOT the point of the exercise!!  As stupid as I felt it made me realise this instinct I have to help Aria and bring her things but really I am not helping her at all cause she needs to learn to do things for herself.  I have sat by her bed for months wanting to do what little I could for her and now that all needs to change.

Aria did warm up a little by the end of the session but spend most of the time crying for her pushchair/pram/stroller.  The PT therapist suggested that perhaps Hamish and I could think about sitting in the waiting room next time.  Or at least using that as a motivator to get Aria to do stuff.  Sounds horrible right?  But this girl does not want to move her tired body.  Fair enough- it have been invaded how many times?  Poor Sweeties.

FYI- we are still having a great time at home

Well Aria’s transition to home continues to go well. Yesterday we plucked up the courage to take her on her first outing. Predictably it was to Target (our favourite store) and Aria had a great time. She picked out the things that she wanted; shoes, a drink bottle, sun glasses, a towel, pillow cases… She really enjoyed the new sights.

She also spent the whole day from when she got up till bedtime with her speaking valve on. She was very excited to put it on in the morning so she could talk to us and tell us what she wanted. It also seems to be helping with her breathing too as the different air flow it creates to allow her to speak also increases the strength of her cough. Adding to this great day for Aria was that she spent about 6 hours breathing regular room air (she has been on oxygen support most of the time since she got off the ventilator).

So all in all Aria is going really well. The next big challenge is getting her moving under her own power again. We gave her some time in her walker today but she was pretty reluctant to give it a go although we did walk around the lounge a wee bit. Slowly but surely we’ll get there I’m sure.

Lastly there was a comment on the last post regarding why God made Aria unwell in the first place and why he doesnt’ get called out for that and just gets praise for making her better. Aria’s unwellness is a sad thing. In a perfect world everyone would not have to suffer sickness and death. However the reality of life is that there is sin and evil in the world and all of us are cursed by it. Aria was born subject to this curse and in her life it meant she was born with this terrible genetic condition. While God could have prevented this, his plans are far superior to ours and he sees the outcome from the beginning and only intends good for his people even though sometimes its hard in the interim.

Aria’s illness has been a great blessing to us as parents and to many around us. Not only has Aria’s character been inspirational, but the way the various challenges we have faced has shaped us has made us much ‘better’ and different people than a life with a ‘normal’ child would have. We have come to know and trust God in a way a regular life would of failed to inspire and we praise God that he has chosen us to care for this special child and entrust us with such a special journey that has touched many lives.

We do praise God for his answering prayers for her restoration to us, but we praise him more for the comfort that even if Aria was not to recover and would pass, that God has guaranteed that she would have healing and life eternal with Him, in heaven, through the death of His own Son, Jesus.

I’ll leave this verse with you all as well as the one you can read at the top of the page…. Genesis 50:20 You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

Aria’s 2nd night at home was much improved.  Hamish managed to tape her o2 probe to her foot AND tape her sock to her foot so from 2am to 6am there were no alarms.  And he only had to suction her once.  The speaking valve helps expand her lungs more and we are getting out some lovely junk that has been sitting there for awhile.  So so pleased Aria has embraced it.  This morning she was really excited to put it back on.  She has been saying lots of things.  We were watching the Little Mermaid on TV and she said ‘dolphins’ when they came on.  And she is back to saying No Way!

Asher seems a bit more settled today too which is good.   I think we all do.  I did Aria’s morning meds (8 of them) for the first time, it was a touch stressful but got there in the end.  Hamish has been doing them in the morning and I have been mixing up her feeds but we are swapping today

Aria is having a nap now and then we are hoping to take her to Target for some bits and pieces.  Yesterday we put them both in the stroller and went for a walk around our apartment complex, it was so stinkin hot though we had to come back inside.

This is Aria and Asher having dinner at their little table.  We had hamburgers and chips last night and Aria enjoyed constructing her burger.

Urine output continues to be really good.  Next big hurdle is to get her in the walker and work more on the PT side of things.  Just being home her range of movement is much better.  Yesterday she sat on the floor and reach right over to get a toy and used her other arm to rest on, great stuff.  And she loves to sit at her table and she sits well independently using her trunk and arms to support herself.