Aria – you’re an interesting little girl
***UPDATE***
Trach is in. Â Everything went well and her vocal cords and airway looks great. Â Aria is awake and doing well
Aria pointed to the book shelf today and asked for some books. Â She told me it was a ‘little one’ she wanted. Â Ok I thought I wasn’t going to show her every single book and get her to choose so I brought over the whole container of books. Â We sorted thru them twice and Aria shook her head to each one. Â We got to the end and she found her book and pulled it out.
What did she pull out? Â Dragon in a Wagon? Â No! Â A fly went by? No! The little red hen? Â No!
Miss Aria decided that the reading material for today would be the Parents Guide to Pediatric Stoma Care.
Ummmmmm ok then
She look thru the book thoughtfully and pointed to the pictures. Â We talked about her stoma and how it was different to her NuNu (g tube). Â She patted her stoma bag that sits on her left side. Â She looked thru the book a second time and stopping at the pictures and pointing and looking purposefully. Â I asked her if she wanted a stoma bag to play with and she did. Â So I got one and she held it and played with it. Â I asked her if I should put it on Green Dolly and she nodded and helped me. Â So Doll Doll has a stoma bag on now too.
For those not familiar the end of Aria’s new intestine comes out to her skin and you stick a bag over it and it catches the fluid or stool.  Maybe one day it will be connected to the hole God intended it to but for now that is fine.
Now she has fallen asleep with the book open in front of her- cute.
We had a big response from the Attitude program that aired on Sunday morning.  Aria’s fundraise online page has been very busy!  Thank you!
Hopefully we have some new followers of our journey. Â Newbies your homework is to read thru the past 500+ posts !!!! Â Ha ha just kidding- that would take awhile.
New Zealanders- if you missed it you can watch it here. Anyone outside NZ you can watch an advertisement- lucky you!
Aria goes for her tracheotomy tomorrow at 1 pm (US Central) 5am Wed (NZ)! Â Please keep her in your prayers. Â It is a simple procedure under GA.
32 Responses to “Aria – you’re an interesting little girl”
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- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 19 Apr at 8:04 pm
That is very cute she choose to read about stoma care!! It’s funny over the last year or so reading your posts about Aria it feels like we know her and her personality and as I was reading I thought yip that sounds like Aria and then had to remind myself that I don’t actually know Aria personally just all about her amazing journey (if that makes sense?).
All the best for tomorrow and her trach, I hope it all goes well. XX
# 19 Apr at 8:31 pm
every so often I “promote” your website via twitter and there’s no way of telling if it helps but with my 1900 followers i sure hope some people from around the world ‘drop by’ and who knows help you one way or another! cheers and bless you , marcel
# 19 Apr at 8:34 pm
Hi anita,
It just shows what a bright wee girl she is and her interest in her own care and well being. May God richly bless you and your family through this tough journey that he has you on. His ways are definately not our ways. May God protect Aria while she is under the GA on Tuesday your time ( 3am Sydney time Wednesday).What you all are going through is for a reason,even though you may not see it, however we know that our God is a big God and he see the big picture, the begining and the end of this Story. At least with the Trac she wont be welded permanently to that bed. Aria amazes me but for her its normal every day life shes known nothing else. Belss you all.
# 19 Apr at 8:35 pm
Will be praying for the trach tomorrow. I pray she will be much more comfortable without that old tube in her throat.She is such a trooper at handling things I feel like she will adapt well with God’s help.He is with her every step of her journey.What wonderful parents she has.
# 19 Apr at 8:37 pm
Yes we will be remembering you ALL. Tough times but we have a POWERFUL God don’t we. I wonder what Aria will make of the trach.And what does Ashie say about it all. I guess to him all that goes on around his darling big sister is “normal”! He must be almost talking now?
# 19 Apr at 8:39 pm
I missed Attitude on Sunday but found a link from yesterdays post so I watched it last night on TVNZ on Demand.
Have been following your posts for last 8 months and like Lisa said above (it is easy to forget that I actually dont know your family or Aria but know about her journey through your posts)
I just want to thank you for all that you share with us.
My prayers will be with you all tomorrow 🙂
# 19 Apr at 8:41 pm
Awww Aria you are funny, interesting the things she gets attached too and likes to hold/read etc, but you are sooooooooo cute and Nana loves you heaps. Yep what Aria has Green Dolly should have too.
Praying the Tracheotomy goes well in the morning.
# 19 Apr at 8:44 pm
Aria, you are the sweetest girl!!! Hope you are all doing OK MacDonald family – will certainly have you in my thoughts tomorrow morning as Aria goes in for her trach. Love to you all! x
# 19 Apr at 9:01 pm
Im one of the new followers that you mentioned and yes I have ready all the posts that have been posted since day one ha ha. Your family has touched me so much that I just wanted to feel a part of the journey that your coragegous daughter and your family are experiencing. I posted your fundrasing campaingn onto my facebook and one of my close friends works with a lady who knows your family. She has done alot of fundraising and I have offered my services with whatever adventure she tackles next. My thoughts are with you tomorrow and I hope that everything goes well. Lots of hugs and prayers
Vicki
# 19 Apr at 9:31 pm
Aria is definitely an interesting girl, & cute girl. 🙂 I pray her tracheotomy goes well, & that it will help her get stronger! Have a good day tomorrow! God Bless!
# 19 Apr at 11:08 pm
lol so cute and funny – curious little person – Am praying that all goes well tomorrow and that soon Miss Aria will be able to have some time out of her room
# 19 Apr at 11:29 pm
Oh she is just priceless – what an intelligent and understanding wee soul. Will be thinking of you when she is having her op.
# 19 Apr at 11:36 pm
hey anita, allister here, random i know but i follow your posts everyday and although i may not have the same beliefs as you guys i really respect you for what you and hamish are doing, Good luck 🙂
BTW she knows more about hosital stuff than i do and i had heart surgery 😛 oh and shes 3 😛
# 20 Apr at 12:09 am
Good on you Aria – what a bright cookie and so lovely that she is processing everything in her wee mind. I watched the programme last night and I found myself crying. I really miss you! and your input! Plus it really showed how lonely and tough it must be. I thought it was a really good honest reporting. Lots of love my friends and I’ll be thinking and praying for you at 5am tomorrow. I’m setting my alarm! Much love. X
# 20 Apr at 1:37 am
How cute, Aria is obviously a bright wee cookie. I’ve been sending out lots of copies of Hairy Maclary to the US, trying to convert them to all the great NZ authors 🙂 Best of luck for the Trach.
# 20 Apr at 1:44 am
Aria is an amazing girl! (Well.. the parents too.) We are very thankful for the great communication through facebook and your blog, it does help us to be focussed in our prayer for you. Blessings and lots of love the Sonnevelds
# 20 Apr at 2:31 am
very cool on attitude. got to watch it today xx
# 20 Apr at 2:33 am
It is a privilege to share this journey with you. Since the Attitude programme I have read most of your posts, and just marvel at YOUR attitude, and courage. You are inspiring. I add my prayers to all the others, knowing our Heavanly Father hears and answers. Much love xxxx
# 20 Apr at 3:27 am
We too are new followers to Aria’s journey. What a courageous family..I took the newbies challenge for homework and read through all the posts – what a lovely way to spend a rainy sunday afternoon!! 😀
You will all certainly be in our thoughts and prayers..xxx
# 20 Apr at 4:34 am
I am sometimes gobsmacked by the wisdom of little children, most especially little Aria who is definitely wise beyond her years. Fancy wanting to read about stoma care!! My prayers are with you for tomorrow morning. I am sure Aria will be more comfortable with the trach and will get stronger. May God bless you all at this time.
Judy.
# 20 Apr at 4:42 am
Aria is an interesting girl 🙂
I couldnt get over the fact that Asher hasnt grown so much\
and what a loving big sister he has 🙂
praying about tomorrow
# 20 Apr at 7:08 am
What an amazing girl!!!! Praying for your day and the procedure this afternoon! Love and hugs to you all.
# 20 Apr at 7:54 am
That’s too cute! I love how kids come to terms with what they have going on with themselves! As they get more comfortable with themselves and what’s going on. As adults we sometimes freak out, but with those babies they just go with the flow. So reselient! i love it! I think that’s how God intends us to be! I’ll be praying for sweet Aria and the rest of you as she has her procedure! Hang in there and may God Bless you all in a very special way!
Love
Tina
# 20 Apr at 9:03 am
She’s so precious. But you knew that. 🙂 Praying! Read Psalm 37 this morning. vv. 18-19 reminded me of you.
The days of the blameless are known to the LORD and their inheritance will endure forever. In times of disaster they will not wither; in days of famine they will enjoy plenty.
A beautiful promise in the midst of hardship.
# 20 Apr at 5:34 pm
Glad everything went well, and very pleased to hear her vocal cords looking gd I had wondered how they’d be after being intubated for so long! I was also wondering how the wee leaks in her bowel are going? A few posts back you had mentioned that fissures where forming, hope you don’t mind the question.
Take care xx
Lisa D
# 20 Apr at 6:47 pm
So glad the trach went well.I beleive it another step to her healing. God is so good.
# 20 Apr at 9:12 pm
Does this mean that when Aria is not needing the vent so much they will change the trache to one where she can talk? Pleased to hear she is taking it all in her stride and showing her sense of humour as well! Still thinking of you guys heaps and was great to see the tv clip. Stay strong- Luv Angela
# 21 Apr at 12:20 am
So glad that all went well with the trachy. praying for you all as you adapt… XX S
# 21 Apr at 4:49 am
Watched the programme on TV the other night amazing Aria and parents.
Can only support you with our prayers at the moment may your God be with you we are praying for you all.
Pat & Steph
# 22 May at 6:40 am
Aw, she wanted to find a book about kids like her 🙁
I googled to see if I could find one for kids….no luck yet but I’m keeping my eye out 🙂 Medikidz looks promising; they make graphic novels and comic books for and about kids with problems like asthma, leukemia, diabetes, etc. None of their books are about intestinal problems (yet?) but their website indicates that new books are going to be published…..maybe we’ll see something on the horizon for kids with ostomies. 🙂
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