Starting again
Well since transplantaversary we have gotten out of hospital again and back home.
The steroids have done there work and Aria’s rash which at its worst made her look like one of the walking dead has now progressed to being a whole lot of dry and peeling skin. Not great but much better than it was, unfortunately this means we need to keep putting moisturiser on her which she HATES. Its funny the things she will happily tolerate and those that drive her into a screaming fury.
As for Aria’s outputs which have been tormenting us for sometime, they are currently behaving themselves better even to the point that last night we were able to restart her tube feeds again. This was a really nice feeling, even though that means Aria at times has three cords between her and her faithful little pushchair which carries her TPN pump, replacement fluids pump and now her Enteral feeding pump and their associated bags. Aria loves any time of the day that she gets free of those and runs around like a maniac to celebrate her freedom.
We are hoping these reduced outputs will continue to trend down and we can start aiming to get rid of the TPN again. Thanks for your prayers about these issues, they have been doing our heads in at times but we are hopeful that God has seen fit to return her outputs to normal now.
11 Responses to “Starting again”
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# 11 Feb at 1:23 pm
Praise the Lord with you, what better news to hear thank you Papa for answers to your hearts desire and our imperfect prayers. Praise God praise God, I am so thankful to His faithfulness amen. Good warrior princess Aria, you are such a soldier, Onward christian soldiers marching as to war with the cross of Jesus going on before, Christ the royal master leads against the foe, forward into battle, see His banners go, onward christian soldiers marching as to war, with the cross of Jesus going on before amen, amen, amen.
# 11 Feb at 1:29 pm
What a heartening phrase! “Runs round like a maniac”!!!! There were moments when running was not on the day’s list of activities. What a lot we all have to be thankful for!
# 11 Feb at 1:41 pm
Glad to hear that Aria is doing so much better and I agree with Cousins above that it is indeed a blessing in intself that Aria is running around like a maniac when her pumps are off 🙂 Will continue to pray that Aria continues to heal and get stronger and better every single day 🙂 Blessings xx
# 11 Feb at 3:30 pm
So glad to hear that she is doing better! Praying that continues! God Bless!
# 11 Feb at 4:12 pm
I have been out of circulation for a couple of weeks and just caught up on all the news. Wow! What a couple of weeks.
Amazing that it is a year already since the successful transplant. It’s also great to see the clown doctors in NZ, and the amazing tribute. I think the Attitude programme is awesome.
You sound very tired Anita. So much worry and your love for Aria just oozes through. I am so grateful that our Lord has heard your prayers and those of us following your journey. Having Christine to help sounds like it was such a precious gift to you and Hamish.
I have been praying a prayer you asked for a little while ago that the family could all be at home together. To read a whole week together – I just felt so grateful to the Lord that he heard that prayer.
I pray that things will continue to get better and better, and that your heart’s desire of everyone being together for weeks and months on end, will come true.
Big hug Anita. May the Lord bless you personally in a very special way today.
# 11 Feb at 4:23 pm
Best wishes for continued improvement xx
# 11 Feb at 7:19 pm
Praying for you that the outputs will return to normal!
In Christ
The Bracefields
# 11 Feb at 8:08 pm
Praying for continued and improving outputs for Aria & total healing for the remnants of the rash. God bless you all Anita.
# 11 Feb at 9:21 pm
Praying for all needs. News sound good today and Aria seems to be doing much better. Pray this all continues for all of you.Thanks be to God.
# 11 Feb at 10:34 pm
Kathleen and Anita have said exactly what I was going to – was awesome to read, such a vibrant, happy and bright mental image, “runs around like a maniac”. Love it. xx
# 21 Jun at 9:09 am
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