Home sweet home
Aria and I went back to Starship this morning, reporting at 9am as requested. Despite only going home on night leave and a promise we would keep our room, we arrived at room 9 on 26B and saw that there were new occupants. I had a funny feeling that would happen. So we floated around for a bit between having a finger prick, waiting for the results and having the ABX.
It was actually a very busy morning with lots of visiting and visitors. We chatted with Sam’s mum Shirley for awhile and then popped down to see Sam and Lara who are unfortunately in too. Back up to the playroom and had a meeting with Tracey from KIDS to chat about respite funding. Then Katherine, who used to help me a lot with Aria when Asher was born, came to visit as she was up from Gisborne and was over in Auckland Hospital having a study day. Phew! I was really thankful cause it made the 5 hours with no room to sit in bareable.
This morning I felt sure that we were on top of Aria’s temp and the final dose of Gent would finally knock it on the head. However when we were in today it started to creep up to the high 37s. So whether Aria is home for good or back in the next couple of days we are not sure.Â
In some ways it is really difficult to come home. There is alway a pile of washing and neglected housework to catch up on and a fridge full on suspect food items. Lots to do and very very little energy.
Got an email updating us on Aria’s funding today and sounds like there has been progress made in data gathering for the ‘negotiations’ What there is to negotiate I am not sure but at least things are progressing. The business manager assured me she understood our position is difficult and offered to meet me any time to discuss. This was great to hear.
Thanks for your support, comments, texts, meals, emails, facebooks etc etc. Thank you for your prayers !!
4 Responses to “Home sweet home”
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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
# 10 Sep at 6:40 pm
I will come and take all your washing next week and do it… or give it to Alex if she doesn;t mind and I will grab it off of her. Yay for owning a dryer so even if it rains it will be done!
# 11 Sep at 1:47 am
We love you guys!!!! Continuing to pray for these tough emotional and physical draining days!!!!!!
Healing IS coming!
# 11 Sep at 5:59 am
I continue to pray for you! I can’t even begin to imagine what you’re going through, but I know it’s extremely difficult! May God continue to strengthen you, & give you peace during this time!
P.S. The girl I told you about, named Marcie, is in a very bad way. She was doing great despite her condition, but now she has gone septic. Meaning she has blood poisoning. They tranferred her to the University Of Michigan Hospital. Please be praying for Marcie & her parents!
# 11 Sep at 10:55 am
Wish I was closer to be of some practical help. Great to hear Katherine was able to visit. Look forward to seeing you next month. We keep praying