Sophia the brave 💜
Little Sophia has a rare metabolic disorder - currently in PICU in starshipAuckland
Little Sophia was born on the 30th of April 2020. Parents, Brooke and Jerry are absolutely besotted with their little princess.
Unfortunately little Sophia started experiencing some difficulty breathing at 3days old - and was rushed through to Starship hospital PICU - And within 24 hours she was diagnosed with an extremely rare metabolic disorder known as Propionic acidemia.
Little Sophia was then placed on a special dialysis machine to filter her blood.
So far, so good - Sophia is responding to treatment.
Sophia has a long road to recovery and she needs all the prayers and love that everybody can send 💜
Alesha Davis' involvement (page creator)
My sister her husband and their baby 💜I just want to help them to care for their Sophia
Use of funds
Sophia’s mummy and daddy will continue to use these funds for extra support and help when needed, and to lighten the financial stresses for those horrible times when they are in and out of hospital so they can both be there to support Sophia together and not focusing on work or bills.
Well today we discussed all about Complications with a liver transplant surgery... Now that we’ve got that out the way we’re starting to feel a lot less stressed about it all!!!
Of course it was scary hearing all those risks and complications that can happen... but we keep reminding ourselves there’s risks with everything in life and not only that they have to tell us every worst case scenario but in hope nothing like that will never happen!! However we can’t be oblivious to it either...
But hay... we can cross the road and be hit by a bus too but we have to know the worst outcomes ... doesn’t mean it’s going to happen 🤞🏽
Trying to keep that positive thinking up and remembering the benefits too of the surgery for Sophia 🌟
We also found out that if she was to have the surgery she would slowly be weaned to longer periods of times of feeds and it’ll be normalised over time like us... and not every 3-4hours through a 24hour period.. that was a big bonus for us to hear cause we may be able to eventually get sleep again... 🤣 💤
We also found out she’d be able to eat a semi normal diet, she would still have some small protein restrictions but nothing like she does now. 🍗 🍴
Sophia also was assessed from the developmental team this morning as part of her assessment.
Which was the Occupational Therapist (OT), Physio and Speech Language Therapist (SLT)
And of course Sophia turned into this shy little girl and didn’t once make a noise while they were assessing her and wouldn’t crack any smiles to them 🤦🏼♀️
But overall they were really happy with her development so far for everything she’s been through, there was a few things they will keep an eye on.
Sophia is a little delayed with her progress with some things like being able to pick things up or hold things, being able to hold her upper body and head strong but they’ve given us some really useful tips to help strengthen these things and practice with her. 💪🏽
Of course they also spoke to us about Sophia’s feeding plans and how we’ve been coping with it all and the feeding pump... of course I balled my eyes out like a baby as it’s such a touchy subject with me but the SLT was really supportive and very positive in thinking Sophia could do really well once she hits solids but that’s another day ahead... that we will just keep praying for 🙏🏼
Then Sophia had her 3month vaccines this afternoon, she had to have an extra one to prepare her body incase she has a liver transplant in the future to give her that extra support from any other nasty diseases. 💞
Sophia had a really good day overall and handled everything like a trooper as usual, we’re so lucky she’s so cruisy with everything and has to just go with the flow. 🤍
Our next assessment day is next Tuesday in which Sophia will be admitted into hospital for the day/night as she has a CT scan booked under a GA.
So we ask please if you can keep her in your thoughts and prayers on Tuesday for her small procedure and that it all goes well. 🙏🏼🤞🏽
We will continue to keep you all updated and thanks for everyone following Sophia’s and our journey and for always keeping her in your prayers and thoughts 💞🌸
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This page was created on 5 May 2020 and closes on 6 Nov 2020.