2010 January - Aria MacDonald

Aria is back on the 24/7 med to help stop her bleeding.  She had had quite a bit of bleeding on Tues/Wed/Thurs.  We are disappointed that she is permanently hooked up to the pump all the time without a break but it is better than blood gushing everywhere.

I found myself surprised as how well we handle the blood.  I was remembering this day and glad things are better now.  Not that we are happy about Aria’s bleeding, perhaps we are used to it.  And we know it could be worse.

Aria of course handles everything well.  Mostly she just gets annoyed when we hold her nose to stop the blood and she can’t see the TV.  Funny girl.

Of course all the bleeding meant that Aria had a transfusion yesterday and remains Status one for another week.  Really really hoping this is the week.  Not that we don’t pray for that every week.

Actually it was funny, this weekend both the Bullis’s and the Arm’s families are away.  We joked that transplant better not happen cause some of our Omaha friends won’t be around.  Not that we expect them to drop everything and rush in if they weren’t away but it is nice to have the backstop.  Interesting about how God provides.  One of the hospital staff members who we know well gave me her cell number and said she would be offended if we got the call and didn’t call her this weekend 🙂  She has two little ones and was kind enough to offer to take Asher whenever.  So kind.  Honestly, Americans are super nice people.

BUT overall I think we are doing well.  We are not jumping around with excitement about the fantastic situation we find ourselves in.  But we are managing day by day, enjoying moments and managing about 8 hours sleep a night.  Everything feels better when you are rested.  Aria is actually doing ok.  Hasn’t had pain meds for weeks.  Dare I say it the washouts have helped.  They are every second day now.  She is happy and chatty.  Asher is a wild boy full of energy and life, such a good boy.  Currently wanting to feast on butter out of the fridge so better wrap this up.

One of the highlights of Aria’s days is having visits from the play specialists and preschool teachers. Today we had two visits, one from each department. This worked out well as this morning Aria had a bit of bleeding which meant she needed to be sitting still as much as possible.

First we had the intern for Child Life (the play specialists) come in and make playdough with Aria. This playdough was king of special as it smelled really good as it was made with Kool-Aid (kind of like raro or refresh for you kiwi’s). Aria got to mix all the ingredients together (flour, salt, oil and water) and then was offered a range of Kool-Aid flavours.  There was green, yellow, orange and purple, for those who know Aria there should be no surprise that she chose the purple grape flavour. After it was all mixed we were left with some lovely smelling and pretty looking purple playdough. She was pleased with her result and thoroughly warn out from all her mixing.

Later in the day her preschool teacher visited. The teacher had a whole range of activities that she could choose from, she chose some counting, teapot and beans. The teacher also had a story and a craft activity planned for them. For about 45 minutes (a long time in Aria’s world) she sat and worked through all the activities. They read the story of the three kittens who had lost their mittens, then traced around Aria’s and my hands the shape of mittens and painted them. The teacher gave Aria a pair of mittens to have and wear so they could play with Ice to see the difference the mittens made. They then counted the mittens, had a wee tea party (Aria stole the teachers cup of tea while she wasn’t looking and drank it all down), did the tea party dishes and then played with some beans. After each activity Aria would say “finished”.

These people make hospital life a little brighter for Aria. They add a new wrinkle to her day to keep her stimulated and keep her growing.

Oh yes, on a prayer request note, can we pray for her nunu, this is the tube that takes stuff out of her tummy. It is playing up at the moment and we are wrestling with keeping it in place and working properly. She will lose this post transplant, so God might decide to fix those two issues at once, He’s good like that sometimes.

Today was a mixed bag for Aria.  Some bright spots and some rough patches.

She is a pretty happy girl and sharp as a tack.  You can’t pull the wool over her eyes that’s for sure.  She knows exactly what is going on and tells you without a doubt what she wants (or doesn’t).  You can’t even trick her by using different words cause she know what you are talking about.

Her NuNu popped out a few times today so that was a bit yuck.  Looking forward to getting rid of that when transplant comes.  Although not keen for it being replaced by an NG tube on her face.  But the site is getting yuck- enough said.  Also she had quite a bad nose bleed so that was a bit of drama.  But her HB didn’t drop at all which was weird.

Got another organ offer last night.  These organs were ‘good’ and Aria was the runner up and missed out to another child.  So this means organs are very very close for Aria.  Please keep the three (!) families in your prayers that have lost their little children in the past 7 weeks, it is very sobering.

Ok- only a quick update.  A tub of Ben and Jerry’s Maple Blondie is calling my name 🙂

Firstly, this is Aria’s blog so I will update you with her news.  She had a great day yesterday as you all read.  During the evening though she had some bleeding from her g tube site and nose, nothing dramatic like we used to see.  Thankfully.  But her HB did drop a point overnight so she will mostly likely be transfused again on Sunday and remain Status One for another week.  We feel stink being happy about that but we just pleased that she will be at the best possible place for getting organs.

Asher had his first day at preschool today and had a great time.  Hamish dropped him off and Ash was a little sad but no tears.  When Hamish picked him Asher was like ‘hi Dad whatever’  totally chilled as our boy normally is.  He was there for 4 hours and will do another 4 hours on Friday.  We are so happy that he has the opportunity to escape this place and have some play time with other kids.  Not that he isn’t happy here, he has heaps of fun but he can’t hang out in a hospital 24/7!

The 26th of Jan is coming to a close in the US.  Thank you so much to everyone for the b’day messages, cards etc.  I felt like my birthday spanned thru 2 days because NZ is 17 hours ahead.  I had lunch with Carol and Fran.  We did a spot of shopping at Village Pointe.  Carol and I went on a Ferris Wheel that was actually in the middle of this sports store and we went to Cold Stone Creamery!!  Whoop Whoop.

The two highpoints of my day came from a 3 year old and a 4 year old.  Hamish asked Aria this morning what Mummy would like for a birthday present.  Aria said ‘a kiss and cuddle’.  She was so right!  So I got a nice kiss and cuddle from Aria.  Super sweet.

The Arms family came in a brought a yummy birthday cake from Wholefoods!  Randy and Hamish did Daddy Daycare while Angie and I chatted.  They have a 4 year old daughter Praja.  As they were leaving Randy was holding Praja and I was walking next to them.  Praja was chatting then said to me ‘I pray for Aria everyday’  WOW, I was so taken aback, not because I was surprised but it was so powerful that this little girl was praying for another.  Obviously it was important to Praja to tell me believing that it would make a difference in my life for knowing and more importantly Aria’s life as God hears her prayers.

Anyway feeling very encouraged about the beautiful people God has brought into our lives to bless and encourage us.  He so spoke to me today ‘Look see what I have given you’  I didn’t even really think that much about my b’day but God blessed me with things I didn’t even ask for.  How much more will He bless us with the thing we do?

Aria had a pretty good day today. She seemed to have a bit more energy today and wanted to play, play, play.

Often our days here are spent walking around and around the hospital, Aria too tired or uncomfortable to enjoy doing other things, but today she was really interested in spending time with us doing things.

One highlight of the day was Aria and Asher playing trains together. Asher had decided to get out the big train set he got for his birthday and when Aria turned up in our room she wanted to join in too. Aria asked to get out of her pram and sat on the floor with me and Asher and rolled trains down the sets ramps for about half an hour. It was remarkable to see her so energetic and excited about doing something other than going for walks. I dug out Aria’s train (purple of course) and she laughed with joy and called out “My Purple train” and gave it hugs. The four of us had a great time playing, Asher and Aria negotiated turns and I think Asher loved having Aria playing with him too. Eventually Aria wore down and needed to go back into her push chair – pram – stroller and shortly after Asherzilla stomped the railway into bits.

Another fun thing she did today was painting with paint and shaving foam with the people from Child Life. She really enjoys mixing colours and painting with different textures. She was very proud to show off these pictures to Asher and I when we arrived.

Tonight after she had dinner with the family in our room, spaghetti-ohs and vegemite sandwiches if your curious, she was going back to her room for the night. She was sad to leave me so I told her I would skype her, she grabbed the headphones that we have and put them on ready to go when she got back. Here in this photo you see Aria ready for action and rocking out on her toy guitar.

In late breaking news, Anita has just told me that Aria asked to sit in the big chair/bed that we have in her PICU room. Anita told her that she could if she walked to it. Normally Aria is pretty resistant to suggestions of feet walking but todays full of beans Aria said OK, and strolled on over to the seat and is now holding court there. She is such a card.

Anyway here’s hoping for another day like this tomorrow, and the organs that would make days like this everyday.

Speaking of tomorrow or today back home, it is Anita’s birthday today/tomorrow. Anita is a remarkable wife and mother, a great example was tonight when Asher was flat out refusing to eat for me. I was at wits end, Anita took over and within moments had Asher eating away and enjoying every minute. She is AMAZING and I feel very privileged to have her as my partner in life and in this endeavour. Happy Birthday Anita, you are very loved by your family and by all that know you.

Aria has just started a blood transfusion.

This is good news for a couple of reasons. A) It allows Aria to go back on Status One, therefore having a wider net to catch some organs in. B) It means that Aria stays in PICU for another week where she and we have become accustomed and settled in.

Aria’s blood count dropped further overnight so the decision was made to transfuse to keep on top of her continually dropping blood counts.

Aria has been in a great mood so far today, laughing, smiling and talking as we played and walked around the hospital with Asher and Mummy. Today’s activity of choice was finding as many metal men (bronzed statues) as we could in the hospital. Both Asher and Aria enjoyed spotting them and playing with them. One of the challenging things about staying in one place all the time and seeing the same things over and over and over and over and well you get the point, is trying to find new ways to stimulate Aria. So we think of things to look for or do while we walk, it makes the experience more fun for everyone.

Anywho, we have another week of status one/PICU and the anticipation/hope/frustration that brings. It is tough to juggle the balance between hope and expectation of what God will do, with the reality that it will happen in God’s timing. I’ve been trying to embrace the fact that it will happen at the perfect time and God knows when that it so we don’t have to concern ourselves with the timing of that in the meantime.  That way we can just enjoy each day as it comes without stressing about ‘the call’. To be honest it is nice in theory and we try to live that way but it is hard to not wonder what on earth God is waiting for…..

Thanks for the prayers that Aria would stay Status One, God answers prayers, Aria’s life is living proof.

Aria’s status one expires tonight at midnight.  That means we should be leaving PICU tomorrow or Monday.  We have been here since day three of being in Omaha and I hate to leave.  I dread her being discharged but dread going to the ward more.  Hamish roomed in with her last night and only got blocks of sleep in half hour lots.  Crazy.  But we still have TPN to re-learn on a new system so that will take time.

The team got another offer of organs last night for Aria but turned them down.  The patient had been too unstable was the reason we were given.  It is a good sign we are getting calls.  But both times organs have obviously come from very sick children which is sad.  Must be hard to offer your child’s organs for donation for that kind offer not to be taken up.

So perhaps her HB might drop tonight and she may need to be transfused tomorrow (doubtful of that) or tonight may be the night she gets her gift.  God will give us strength for whatever lies ahead for the next week.

The family made it back to Auckland safe and sound which was nice to hear.  Alexandra text me to say all was well.  We will miss them, it was nice to have them over and hard to say goodbye.

Speaking of Alexandra- wasn’t her post just great!  I must of read it about 5 times, I was so proud of her and her insight into the situation.  Everything she said was spot on.  And we would echo her thanks to the many people that have embraced our family and now our extended family.  Thank you so much.  A special thanks to Carol and Cordell for hosting them for three weeks!  You guys are awesome.

Today our little family got back to a semi regular day.  Hamish spent the day with Aria and me with Asher but we meet up and swap over and hang out a bit.

Aria is due to come of Status One tomorror at midnight.  So we are hoping her hemoglobin(HB) drops overnight so they have to transfuse her.  I know- it is seriously weird, it is the exact opposite of what we hoped for at home!  They have also stopped her epo, which was a med to help her make red blood cells, in an effort to keep her HB dropping.  Bizarre!  The theory being better to have to transfuse her (and keep her Status One) than to drop down the list.

If her HB doesn’t drop and she doesn’t get transfused tomorrow then looks like discharge on Monday 🙁 This doesn’t thrill us.  We know she will drop down the list if she comes off Status One but what isn’t clear is if she starts from the beginning again.  The longer she is on the list the higher she climbs so will that be re-set if she comes off Status One? Hopefully I explained that correctly.  Hopefully tomorrow we will get more answers at rounds.

Aria is doing pretty well.  She is tired and a little grumpy at time but she does manage smiles and laughing at Asher’s funny antics.  She even managed to write her name yesterday!  It was actually really good.  The R was a little funny but you could tell it was A R I A.  Will take a photo and post her work soon.

In other news we finally got access to our internet banking!!  The vice president of the bank had to get involved.  It took us a whole month and many phones calls.  Then once we got access we had to request further access to get online bill payments!  I thought perhaps we were in for another month long battle with that but got access to that within an hour or so.  There was no way I was doing stamps, envelopes and cheques!   Still waiting for eftpos card which we now can have (you have to wait 30 days) and they will arrive in the mail in 5 working days!  Honestly the whole process has done our heads in.  But we are finally sorted which is great.

Anyway as I have been typing Mr Asher has fallen asleep in front of his fave movie Cars!  Better get him sorted.

Written by Alex – Anita’s little sister.

So hands up who was planning on spending the summer holidays in snowy Omaha, Nebraska?

Today was the last full day we (Nana, Poppa and myself) were spending here before we begin our journey home to NZ tomorrow.  The last 3 weeks have been pretty full on but I’ve found my time here to be a HUGE blessing.

As I hinted to before – I hadn’t planned to spend my holidays over here but the Lord had other, and as always, better plans for me. I could go on and on about all the ways He’s shown me how to lean on Him and all the things He’s revealed to me since I’ve been here but you go to church for sermons – not Aria’s website.

However, I do feel a great desire to share with you how thankful I am for all the people that have supported, looked after, driven around, feed, entertained, listened, and encouraged us. There is a whole group of people who don’t know us from a bar of soap but have welcomed us into their lives have gone out of their way so many times to make things easier for us. They don’t wait for a need to pop up – they actively ask and search for anything they can do for us.  This is no small effort on their behalf and to them I am truely grateful.

To name a few. Sharon & Doc – the makers of some fantastic cherry pie and heaps of other American delicacies. Dan and Fran who have been ferrying us around all over the place, given us tonnes of dvds to watch, taken us out from some amazing Mexican food and so much more. Their two boys Daniel and Thomas – seriously sweet and caring boys – I’ve never met kids of their age (9 &13) quite like them. Randy – the pastor of Grace Reformed – for taking a rather large load of my mind when he told me on Sunday that members of his church were ready and waiting to fill our shoes once we leave. It is so so so good to know that the body of Christ is working together to look after my family!! And thanks to his wife Angie aswell – I know Anita really appreciates your friendship – I’m just sad that I didn’t get the chance to meet you.

And a really really huge thank you to Carol and Cordell. They have provided us with not just a place to rest our heads, but a home for the whole time we’ve been here. They’ve fed us, put up with us traipsing in and out of their house, struggled through with our unpredictable schedules and many many more things (seriously I could go on for ages). I don’t think they realise what a massive comfort and encouragement they’ve been to me personally. Their willingness to serve an entire extended family in any way, at any time is a true testament to the grace and love of our Saviour. I’m reminded of 1 Thess 1 vs 2&3 – We always thank God for all of you, mentioning you in all our prayers. We continually remember before our God and Father your work produced by faith, you labour prompted by love, and your endurance inspired by hope in our Lord Jesus Christ.

 I can’t express how much that has meant or how much it’s inspired me. I’ve struggled since the day that Anita, Hamish, Aria and Asher left to figure out ‘what I’m meant to do now’. How can I actively help and serve my family when they’re so far away?? The answer – I can try to be the Carol and Cordell to someone else’s Anita and Hamish. I encourage everyone to keep praying for the MacDonald family – but more than that I implore you to keep an eye out for the people that need you and who are right on your doorstep.

To Anita and Hamish – James 1 vs 12 – Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. To be frank your life is stinking hard! But you are a massive inspiration to me in my walk with Christ and I admire your courage and determination. Through you great things are being achieved – even when you don’t see it.

There is so much more to say but I think I’ve said enough for now 🙂

Praise the Lord! He is the instigator of this whole thing!

Highlight of the Day!  See above!  How excited were we?  Yes I did cry a bit when I opened the box and saw the goodies 🙂  Thank you Randall, we are really grateful.  WE didn’t know about this online shop until we got Randall’s parcel.  Australia and NZ products are mostly the same because the two countries are treated as the same market pretty much.

Lowlight was the car battery going dead in the parking lot of the daycare we were visiting.  Thankfully Cordell and Carol came to our rescue.  Thank you Cordell!!!!!  Cordell left work to bring jumper leads and follow us back to the hospital safely.

Good news was we got to spend about an hour at the daycare we are looking at sending Asher.  Again they come highly recommended by several staff members at the hospital.  One of them has had their 4 kids there over 10 years.  We liked what we saw (very clean, long serving staff, small classes, nice indoor/outdoor facilites etc) and they were understanding of our situation and are willing to be flexible.  Funny at home we would never consider sending Ash to a daycare centre but would choose home based care.  Here it is the other way around because they don’t have the set up or organisations like Porse that were so good to us.  Anyway the lovely ladies there let us come in out of the cold and gave Asher lunch while we waited for the Hamish and Cordell to do men things with the car.

Tonight Hamish and I are going out on a double date with Randy and Angie, we are really looking forward to that!!  So there should be more highlights to come and hopefully no more lowlights.