2010 September - Aria MacDonald

Prayers for Aria please. Looks likes she has caught the cold that has been in our house this week. Inevitable I guess but still a shame.

Overnight we had to increase her oxygen flow to 2 litres up from .5 litres. She started breathing harder and spiked a temp to the dreaded 38.5 C. Thankfully her homecare nurse was due to come at 8am for blood draws and an assessment. She called the team and at this stage we will watch her at home but if we have to increase her o2 or she spikes another temp we have to call.

Please pray we have seen the worst of this cold and Aria’s condition improves rather than spirals down into something more menacing.

While we knew that this was going to happen sometime and with fall/winter approaching it was going to happen sooner rather than later, we were really enjoying our nice smooth run since discharge. It’s a bit frustrating to lose ground with her oxygen requirements (even temporarily) and with her sleeping through the nights but we’ll take her having a little cold over the other ‘big nasties’ that can effect post-transplant kids.

Thanks again to all our prayer warriors, your a HUGE part of Team Aria!!

UPDATE: THANK YOU for praying! We have been able to turn down Aria’s o2 to 1 litre this afternoon and she is sounding heaps less rattly. Happy and playing this afternoon. Please pray for our night- that it might be filled with sleep for everyone.

We had a bit of a harrowing experience today with the beloved Green Dolly. For those who don’t know Green Dolly or Doll Doll as Aria calls her is Aria’s constant companion and has been for the best part of 4 years. The things that Green Dolly has been through would blow your mind. She has pretty much had every test, procedure or treatment that Aria has, only often these things have been performed by Aria, not always the gentlest or most proficient of hands to find yourself in. Aria loves Doll Doll like she’s real, and is her best friend and confidante, she feels like part of our family.

Well today Aria, Asher and I went into hospital to pick up some refills on a couple of Aria’s medications. Anita stayed at home because she is feeling a little under the weather at the moment (prayers for that please). We got there and for a change Aria went in the back seat of our double stroller with Doll Doll while Asher went up front. We dropped our prescriptions off at the pharmacy and then we headed to the cafe to get something to drink. The prescriptions were ready when we arrived back and Aria was super-excited to hold onto her medicines, especially her itchy medicine. We then left and headed to our next stop, Toys-R-Us.

Toys-R-Us was really fun, the kids had a good look around, testing out the various toys they found. Thankfully our kids aren’t normally kids that get the ‘I Wants’ and they moved happily enough from toy to toy. The highlight of our trip were a Thomas set that was set up to be played with instore. Aria stood up next to it and played for a while having the occasional break on my knee to recover. It is a good sign that she is willing to push herself and do things on her own.

After leaving Toys-R-Us we were heading homewards when Aria asked for Doll Doll. That is when I had a sudden realisation I had not seen Doll Doll for a bit and wasn’t sure where she was. I pulled into a store nearby and searched the car for Green Doll… nowhere to be seen. So I ask Aria, “where’s Doll Doll?” Aria tells me that she didn’t have her at the toystore and that the last time she remembers having her is at the hospital….. “Oh :(” So I ring Anita, let her know we won’t be back anytime soon as we are heading back to hospital to try and find a missing Doll.

On the way home I talked to Aria about where she might think that Doll Doll is and that we will try and find her but Doll Doll might be gone. Aria was very stoic about it all, not seeming nearly upset and as worried as I was. She calmly told me “Blue Doll” would be the replacement if Green was not to be found. We decided to talk to God about Doll Doll, that she would be found safe and sound somewhere in the hospital.

When we got there I retraced my steps around the hospital with a growing sense of dread that Doll Doll would be gone forever. I prepared Aria saying that we might not find her, she told me “Mummy find her” to which I replied, “Even Mummy might not be able to find her”. The search continued….

The last place that we checked was in the Cafe…. nowhere to be seen. As we left the cafe I noticed a cleaner nearby, I was going to ask him where a lost doll would be handed in but he was wearing headphones so I didn’t. Instead I asked another cleaner a little further down the hall. He told me that he didn’t know and that I would have to check with security. As I was about to try and find a security guard the cleaner asked me to wait for a minute and that he would check with the first cleaner I saw. Moments later, the first cleaner pops away to a nearby ATM and pulls out GREEN DOLLY!!! You would not believe how relieved and grateful at that moment. Aria got Doll Doll back and as we walked away she started to cry big old tears of joy and saying “Doll Doll Back!”. She had been putting on a brave face, she is a stoic one sometimes our Aria.

Anywho, what could of been a terrible situation turned out alright and proved to be a great ‘teachable moment’ for Aria and Asher. The new plan is for Green Dolly to be an ‘at home’ dolly only, we just can’t bear to lose someone so precious to someone who is so precious to us.

P.S sorry for the long post 🙂

I don’t have anything particularly wonderful to say.  To be honest it is all rather boring around here.  Boring and busy.  The days seem to fly by and not even sure why.

Aria continues to do well.  Her walking and standing are coming along really great.  Her fine motor skills like writing and colouring are not going super well.  Which is very odd because she loves OT and hates PT.  But seems to be doing better at the PT side of things.  We are very much hoping Aria will be starting school in June 11, in New Zealand.  So encouraging her use of a pencil and felts is kinda important.

It is exciting to think of her going to school, less exciting to think of her starting during cold and flu season.  Mmmmm.  Still her lungs hopefully will be healed and better by then.   We are trialling her off O2 during the days and that is going well.  She sits around 95 which is ok.  We changed O2 suppliers, thankfully, yesterday and now have better equipment.  So we can take her rate right down to 1/8 or even 1/16 of a litre of o2.  She does really well on 1/4, sits at 100.  So she is making progress.

We got to church on Sunday which was awesome.  Aria loved it!  She is really excited to go back.  Everyone was so kind to us.  We got asked a few times whether it feels like we are on vacation or if this is our life now.  I said it feels like neither of those things more like recovery.  We are still recovering, like Aria, from what we went thru and what we saw our daughter go thru.  Very painful still.  Some days I feel like I just have nothing to give.  I hope that will change because I want to give a lot.

Lastly we were VERY excited to read this article.   Finally fundraising for the renovation of Aria’s ward, 26B and 26A has started.  It is badly in need of a reno and I am dreading going back.  Anyway.  New Zealanders please consider donating, honestly $3 amount quickly add up!  See below.

The fundraiser runs through September atwww.trademe.co.nz/starship. People can give $20 by dialling 0900 STARSHIP or text STAR to 469 to give $3