Rolling….
Today had a few highlights.
The first and probably most significant one was that Aria got moving under her own power today, well sort of. The Physical therapist has a walker that Aria got into for the first time today and much to our surprise she took off like a startled rabbit. Now the walker supports most of her weight and I was giving a bit of guidance and a little ooomph here and there but she was churning those legs and propelling herself along pretty well. She managed to get from insider her room to the front desk of PICU, about 25m or so. While that in itself is not a huge way, for a girl that hasn’t really used her legs for about 6 months it is MASSIVE. This will hopefully be the start of big things for Miss Aria and her legs.
The second highlight was the ongoing education and preparation we are undertaking to be able to care for Aria at home. We met with one of the transplant coordinators twice today to discuss what we would be doing at home with Aria, it was really helpful to get a better understanding of what things would be like. The other big move forward in our preparation was changing Aria’s tracheotomy appliance for the first time. It was a little bit weird to do but quite straightforward. This also meant that I was able to take Aria for a walk by myself for the first time since her first transplant. YAY!!
The last highlight is her continued avoidance of dialysis and slowly climbing urine outputs. Keep praying for this area particularly, it is a huge part of where we are at with getting her out of hospital.
Thanks again for your prayers, we have seen how it has changed Aria’s life dramatically the last couple of weeks.
27 Responses to “Rolling….”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 29 Jun at 8:48 pm
Woohoo !! Mobile Aria. Good work. Praying for more output from the kidneys.
# 29 Jun at 8:51 pm
WOW, what an achievement!!!!! … very, very excited for you all. I still remember the day Scott walked out of the step down Unit. Keep up the great work. I have such a good feeling, you will be home very soon, well at least out of the hospital room…yay!! Love and best wishes always from Nicky Large and her brother Scott in New Zealand
# 29 Jun at 9:06 pm
I can only say Thank You God for what you are doing in Aria’s life.Such good reports and will be praying for those kidneys. Enjoy every day with the new Aria. You are such a special family.Thank you for sharing your journey with us.
# 29 Jun at 9:16 pm
Well done Aria! That trip to the front desk must have felt like a marathon! We love hearing what’s happening and knowing exactly what to pray for – kidneys it is!
# 29 Jun at 9:18 pm
wtg Aria keep it up sweetie
# 29 Jun at 10:02 pm
Wow that’s awesome that she is able to walk so far so soon after first trying!!!! Well done sweet heart:-)
# 29 Jun at 10:56 pm
Awesome stuff!
# 29 Jun at 11:21 pm
Wow! but why am I so surprised? Papa thank you for loving Aria it surely makes a difference when youre there. Acknowledging you Papa into our lives makes everything perfect halleluia people of God halleluia amen. Papa! her kidneys will be perfect too eh? Thank you Papa thank you for all your loving miracles for Aria and family
Bless the Lord o my soul and all that is within me bless your holy Name!!!!!!!!!!!!
# 29 Jun at 11:24 pm
Great work everyone- it is wonderful to hear of all these little improvements- after months of feeling like you weren’t getting anywhere- finally things are coming together. Praise God
# 30 Jun at 12:49 am
how AWESOME – am praying that her kidneys start working normally – how great she is doing
# 30 Jun at 1:13 am
What great news for the whole family. I pray the urine output will keep going up and that Aria’s improvements continue.
# 30 Jun at 2:11 am
Yay for such amazing progess! Go Aria 🙂 Will keep you in my prayers and thoughts.
# 30 Jun at 2:13 am
Just so pleased for you and all the encouraging news. My class continues to pray daily for Aria.
# 30 Jun at 3:18 am
So excited about all the highlights, Go Aria you are such a trooper sweetie. So pleased you and Aria were able to go for a walk together, just like old times. Praying for improved outputs. Love Nana
# 30 Jun at 3:27 am
There will be no holding her back now good one Aria
# 30 Jun at 4:00 am
Exellent news, keep that urine coming, way to go
# 30 Jun at 4:10 am
wow! Aria is doing so well now. Every day just seems a little
bit better that the previous day. Keep it all going Aria.
# 30 Jun at 5:11 am
All absolutely wonderful news! We were very superstitious about using the “H-word” during our long inpatient stay. So instead, I’ll say that I sincerely hope Aria goes to “Rome” very soon.
best wishes from Boston,
Erin, Ben and Blaise
# 30 Jun at 5:45 am
Awesome news 🙂 You are a superstar Aria 🙂 …..and yes, always praying.
# 30 Jun at 8:00 am
Fantastic news! Thank you, GOD!!! Go, Aria! I pray that her kidneys will continue to improve! She’s going to be one STRONG little girl when she goes home! YAY!!!!!!!!!!!! 😀
# 30 Jun at 8:23 am
😀 oh wow such progress… wow wow wow! praise HIM.
# 30 Jun at 9:42 am
Cork and I are simply AMAZED at all this progress! Aria is one determined little gal! Hope to see her (and you all) again, SOON!
# 30 Jun at 1:55 pm
what a great improvement,God be the Glory. we will continue to pray for improvement.
# 30 Jun at 3:19 pm
Wow, it’s totally amazing and brilliant and lovely. Aria able to start walking after 6 months down…. I love that there are always new things and hope in God. So encouraging to read. Praying for your training and the kidneys to keep doing their thing. Much love. XS
# 30 Jun at 3:48 pm
That is so wonderful! I bet she was tired of being in that bed, & wanted to walk! GO ARIA!!! Good girl!!! Praise the Lord!!! 🙂 God Bless!
# 30 Jun at 4:09 pm
A Bible verse comes to mind:
This is the Lord’s doing and it is marvellous in our eyes!
Yes! You are right. The change began two weeks ago today!
# 30 Jun at 5:45 pm
Told you things would improve – go girl – that little brave Aria – get out of that bed and walk – you are doing so well – love from New Zealanders