Do you know what?
We have to say that Aria is really really well. Â We are so excited.
On paper, her bloods/labs look great! Â All normal! Â Liver, kidneys everything! Â We are particularly excited about the kidneys being normal. Â Her BUN has been high for ages and we have learnt to kinda live with it but maybe it is improving.
More importantly we feel like ‘old’ Aria is back.  Actually we haven’t seen her for awhile now.  She really has had such a run of bad health.  Her lungs and two bouts of pseudomona infections and this is BP/sleeping/headache issue.
She is walking around and laughing and having fun. Â Physically she is pushing herself and trying more things like walking side to side and backwards. Â Today she spent time standing on her bed and pushing the buttons on her vitals machine. Â It was such fun helping her balance and ticking her tummy and laughing with her.
The only downer is that the headaches haven’t completely gone away, they are better though.  She only needs regular Tylenol/Panadol and she can mainly be distracted.  We are going to give it a week or two and then maybe do an MRI to check her brain again.
She is still in hospital. Â Her outputs have decreased consistently everyday and she is also at her baseline. Â They are ramping up her feeds slowly she should be on full feeds tomorrow and HOME.
Honestly, we feel so happy and so weary. Â Really really hoping to string some weeks together at home and recover. Â We feel like we have been hospitalised so much lately that home feels strange.
One of Aria’s transplant buddies got his pass to heaven today. Â We rejoice for him but are so so sad for his family and those he touched. Â This journey is so hard and we grieve for our friends and those who we have come to know. Â And those who we know who are struggling with health concerns. Â So times it is so hard to make sense of it all. Â Always I just cling so tight to : Â God is Good. Â Sometimes that is the only answer.
12 Responses to “Do you know what?”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 4 Jan at 9:54 pm
great news about Aria
# 4 Jan at 11:32 pm
oh Anita I’m so pleased that the “old” Aria is making her appearance again. Yet on the other hand so sad about her little buddy who has gained his Angel wings. Your faith so amazes me, and encaorages me to keep on going with my issues. Thanks and I will contiue to pray for continued improvement.
# 4 Jan at 11:50 pm
great to hear my thoughts are always with you. Treasure each moment they are all so important. But it is not easy. I am walking with you love to all
# 5 Jan at 12:00 am
God is so good Anita, and he takes care of our kids in miraculous ways, even if that means sometimes taking them to Heaven. This is a truth that has been driven so deeply into my heart, although the thought of that very same thing with Evie tears me apart. So many before us have had health struggles, and what a blessing it is to know they survived, and even thrived.
Love to you all, and prayers for REST and healthy TIME together.
# 5 Jan at 12:21 am
It really is a difficult road you have to walk- the bitter and the sweet so intermingled. Praise God for your faith- I can’t imagine how anyone could walk this road without knowing God walks beside them. And I thank God too for the witness you must be to those around you. May you have wonderful times ahead- looking forward to hearing about more improvements
# 5 Jan at 12:48 am
Yah Aria, strength to strength lil missy!!! Amen to what fiona said and amen to sometimes we don’t know why but just holding on to God is good!!!
# 5 Jan at 7:58 am
Glad you have the happy Aria back. It must surely lift the rest of you all up to see these good times. If each of us could just give it all to God we would see he knows best and will always take care of us.I believe this is what you all have done for Aria and have been blessed bcause of it. He has truly used your family to be a witness to each of us.May he continue to bless Aria with good health and happiness for your family. Thanks be to God and you.
# 5 Jan at 11:06 am
I am particularly struck by a little phrase in Aria’s verse: “plans … not to harm you”. That’s the same as believing “God is good” but perhaps a little more startling to believe! So let’s say it: God’s plans for Aria will never harm her. He always has the best in mind for her.
# 5 Jan at 11:48 am
It’s so good to hear that Aria is back to her old self again! I’ll be praying that she will be able to stay at home with no problems! I am so sorry to hear about your friend passing away, but now he is in the arms of Jesus. I will be praying for his parents! God Bless!
# 6 Jan at 1:09 pm
Dearest Anita – so pleased for you that Aria is doing well. I get the joy and fatigue so closely interwoven…. and the sadness of sharing in others lives and their losses…. praying for your ongoing sustenance in the place you are. You are all amazing. Much love. X
# 7 Jan at 3:16 am
Wonderful news about Aria – let’s hope and pray you’ve turned the corner!
# 15 Jan at 1:42 pm
Just back from hol – thinking of you guys xx