Tinic
Today we had Tinic as Aria calls it. Â Or Clinic rather. Â Going to clinic is good, it means Aria is an outpatient, which she has been for 10 days now.
We had quite a few issues to iron out with Aria’s health and we were really pleased to get lots of answers. Â Firstly she is on two blood pressure meds. Â One is making her legs really puffy with fluid. Â She was put back on that one last week when we took her off the one what was giving her the rash. Â But given the state of her huge legs we had to show the team and ask for something different. Â And they ordered her a different drug again which is supposed to be good for kidney transplant patients so we will try that. Â So hopefully her legs will look a little better soon.
Firstly Aria’s rash and skin is pretty bad.  She looks kinda terrible.  Her skin is super duper dry and peeling off.  I will leave the description there.  Thankfully we got a referral to a pediatric dermatologist at Childrens and have an appointment on the 23rd of Feb.  The surgeon on this week took photos on her iPhone of Aria’s rash and sent them off along with some of Aria’s history (which is long).  How is that for proactive care?  Awesome!  Hopefully we don’t have to muck around with funding approval too.
Finally we found out today that Aria is malabsorbing fats.  Nothing to do with her gut function rather her pancreatic function.  So she is going to take enzymes four times a day to help like CF kids do.  This might also be a reason for the continued high outputs but isn’t anything to be concerned about.  Hopefully though this is just a side affect from the norwalk and not a permanent thing.  The interesting thing about the enzymes is that we have to mix them with a bit of solid food like applesauce and get her to eat them, four times a day.  That’s going to be fun!  Actually I think we are going to end up mixing them with guacamole because that seems to be her favourite soft food.
Overall it was pretty positive and Aria did really well.
14 Responses to “Tinic”
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
# 18 Feb at 12:56 am
Yay for the positives. And yay for guacamole! Mmmmmm!
# 18 Feb at 4:16 am
The delicate balance of health and well-being, medications and bodies…. always so complex….am glad it seems you are getting prompt pro-active care. Will be praying with you for skin, fluid, pancreas and enzymes to get back into the right balance. Go well my friends – you must be very tired….but I hope you encouraged after your day. Go Aria, keep on trying those foods!
# 18 Feb at 11:44 am
Thanks for the detailed descriptions and we are pleased that Aria is still an outpatient and progress is being made! Praying for you.
The Bracefields
# 18 Feb at 2:03 pm
Continuing to pray for each of you! So thankful that you are willing to share your heart and what God is doing. 🙂
# 18 Feb at 2:13 pm
Praise God that Aria is doing so much better. I trust that the new BP meds will sort her legs out and that the enzymes will sort out the high outputs 🙂 Hope you manage to get answers about her skin and that it clears up quickly, can’t be pleasant for precious Aria either. God bless all of you – you’re always in our prayers 🙂 x
# 18 Feb at 4:12 pm
Glad to hear Aria is doing well! Enzymes mixed with ice cream sounds pretty good to me (: praying for her skin.
# 18 Feb at 4:30 pm
Step by step Aria is claiming this healing. Also good to hear answers being found for problems. Keep up this good work Aria and I will keep praying.Seems like you must have the best medical team in the world.
# 18 Feb at 8:31 pm
I’m glad that you are finally getting some answers! Hopefully Aria’s skin will start healing soon! I hope your family has a great day tomorrow! God Bless!
# 18 Feb at 9:31 pm
So thankful for the rays of sunshine of some steps forwards. May there be many more. Nunu’s coming off is no fun. I do find that sitting with a wheat bag for 10mins or so after application does seem to help mine stay better (some times!) Maybe worth a try! Much love Nola
# 18 Feb at 9:40 pm
Thank you for the updates. Nice to have her home but maybe with a few more issues sorted.
# 18 Feb at 9:50 pm
Praying for you all. Anita you are sounding very calm praise God for that, it may mean that you are a lot more peaceful these days.
Continue to uphold you all in Jesus’ mighty Name amen.
# 26 Aug at 11:17 am
you have got a wonderful blog here! if you’d like to earn some invite posts on my own weblog?
# 16 Dec at 3:19 am
Hello! Just wanted to say great blog. Keep up the good work!
# 17 Dec at 3:11 am
with wonderful gems this kind of as Liberty Store, French Connection, Laura Ashley, United Colors of Benetton andPrinces Street is Edinburgh’s principal shopping thoroughfare and house to the many high street shopsshopping centres to choose from and here we have picked out a few for you personally not to miss.The main shoppinggreat shopping experience you must visit Birmingham’s shopping centre called ‘The Bullring’. The Bullring isIntellectual property, like any other form of property, can be bought and sold in a similar fashion.What is Dublin’s cultural quarter and residence to a big selection of pubs and clubs. When darkness descends on DublinWallis. The availability of printable vouchers makes the demand for the voucher codes more important. It maybringing catwalk adaptations to the masses at prices they can afford and this has proven to get the templatereactions! Particularly if you go dancing in these mary jane’s you WILL hear Ooo’s and Ahs. You’ll probablyyou’ll see the St. Stephen’s Green Shopping Centre, which has over 100 shops beneath one roof. It’s a definite