Sunday in Omaha
As you can tell I am feeling super creative today!
Aria is in PICU and will be for another 5 nights this is so she is at the top of the transplant list. Hamish and I are taking it night by night as to whether we stay with her not depending on Aria and the nurses feedback. I told her last night I was going to go back to the hotel room and stay with Ashie and Daddy and she said bye bye and gave me directions as to how to get back to the room!! So she was fine with me leaving and when I returned at 7am she was happy and said the nurse read her 3 books.
She is doing well apart from when she is in pain and needs morphine and then she has a meltdown. Which is completely understandable because she can’t get comfortable. I so wish I could swap bodies with her and fully understand how difficult her life must be.
We have had visitors today which has been great. Randy Arms and his family came to meet us and brought us some yummy greek food. The first time in ages I actually felt like we were eating food familiar to us!  Asher had a great time with their kids and I was so nice to see him run around happily playing with other kids!!  Angie and Praja came back to meet Aria.  Praja is just 4 so her and Aria had a bit in common, a love of Dora particularly.  Aria sat and managed a bit of conversation and gave Praja one of her Wot Wot stickers!  We were so pleased given just moments before she was having a meltdown because of the pain.
Also Cordell and Carol came to meet us and brought us some microwave cooking things. Â Very handy as the hotel doesn’t have that kind of thing, I guess they assume people will eat from the cafe.
Both families were so kind and warm and there was a sense of instant friendship. Â We were so grateful they just came and ‘did’. Â Often it is so hard to pick up the phone and courage to ask for help and it is lovely when people ‘just do’.
Still got to get to Walmart but got to the supermarket thanks to Amanda.  It was an overwhelming and strange experience.  So hard to know what to buy.  Such strange things.  Like a freezer full of ‘cool whip’ apparently used instead of whipped cream.  I think what we would call mock cream.  Managed to buy Asher some organic yogurt which he is eating just fine, he wouldn’t touch the other stuff.  Also brought some cheese his other fave food but I think the orange colour puts him off.  Might see if I can get organic stuff.  We are getting there slowly with the food.
Anyway, we are still praying for donor organs and soon. Â It is hard living like this. Â No idea how Jodee and family have managed three years!!! Â In God’s perfect timing we are sure.
12 Responses to “Sunday in Omaha”
Leave a Reply
Support Aria
There are many ways that you can support Aria.
- Bank deposit
- Cheque by post
- Contact us directly
Subscribe to updates
Fundraising progress
Aria's support to date:
Progress meter: 75%
Links
- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
The wonderful charity that supports Aria
# 14 Dec at 9:54 am
So thrilled you have had visitors!! Wonderful to hear that Aria’s character is still shining through despite the pain and discomfort, and it is wonderful you sound so comfortable and at ease with the medical team there caring for her. Do hope the ‘food’ thing all becomes normal soon and praying for transplants for both Aria and Mattisse real soon – here’s to pain free days!
Love to you all, keep on keeping on, you are doing amazing! x
# 14 Dec at 11:31 am
You may be able to get real cheddar cheese but might need to look for it. You will probably have to pay a bit more for it though. The same with butter, the real stuff is probably there but dearer. Maybe your new friends will help you find if they are there. Cool whip is yummy but yes it is an artificial cream, with no relationship to a cow at all :-)I do sympathise with the food confusion. Thanks again for the updates. We find ourselves looking forward to them and appreciate your efforts in typing them up.
Love to all 🙂
# 14 Dec at 12:32 pm
White cheese or swiss cheese is much better but still not quite the same. Cool whip tastes like pavalova mix (well I think so). We were shocked to find what should be in the freezer is on the shelf and what should be on the shelf is in the freezer. And yes you will get use to it!
It isnt easy and I always have a hard time this time of year but you will do it, get through it and make it!
Hope Aria has a good night.
Talk soon.
# 14 Dec at 4:28 pm
SO glad you were able to meet the Bullis’!!!! They are truly wonderful genuine people.
# 14 Dec at 4:34 pm
I’m so glad to hear that you some visitors & new friends stop by! That’s great! Lol, about the food. Yeah, it has to be different stuff for you, here. I would love to try real whipped cream. Cool Whip is fake whipped cream, but I still like it; lol. I hope you will be able to adjust & be happy here! God Bless!
# 21 Jun at 8:13 pm
I love to taste some greek foods because they are very spicy.;”.
# 20 Jul at 10:06 pm
Greek foods are like asian foods, they are both tangy and very spicy.,,-
# 6 Sep at 3:21 am
Greek Foods are tasty and delicious maybe because of the spices they put in it:;~
# 11 Oct at 6:09 pm
some greek foods are not spicy but very sweet::`
# 30 Apr at 7:41 am
Its like you learn my mind! You appear to know so much about this, like you wrote the ebook in it or something. I feel that you just can do with some percent to pressure the message home a bit, but other than that, this is fantastic blog. An excellent read. I will certainly be back.
# 15 May at 6:55 am
That is very attention-grabbing, You’re a very professional blogger. I’ve joined your feed and look forward to searching for more of your fantastic post. Additionally, I’ve shared your web site in my social networks!
# 15 Aug at 9:57 am
Saved like a favorite, I like your blog!