Back to page

Sophia the brave 💜

  • Day 2 of Liver Transplant Assessment and Vaccinations.. 📚💉      6 August 2020
    Posted by: Alesha Davis
    Main image

    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 💞🌸

    #sophiathebrave

      0 comments  |  Login to leave a comment  |  Share this update

  • Day 1 of Liver Transplant assessment 📚      6 August 2020
    Posted by: Alesha Davis
    Main image

    Well what a day...

    First we met with the senior liver transplant nurse and she ran through lots of stuff about the transplant all the risks and benefits if Sophia was to have this surgery.

    This by no means would not be a cure or fix for Sophia’s condition and we would be swapping one health condition for another.

    However with a new liver Sophia’s body would have that little missing enzyme and so her body would break down those nasty amino acids that create high ammonia’s from her current condition in which then would stop the risk of Sophia getting anymore brain damage as the high ammonia’s would be gone! 🙏🏼

    Then we met with the pharmacist in the afternoon and went through all the million medications that Sophia would be put on during and after surgery...

    Wow.. there was a lot!! 💊

    Some she would be weaned off over the week, months and years after surgery but some Sophia would stay on for the rest of her life so that her liver hopefully would never be rejected from her body...

    As naturally your immune system goes into an attacking mode when something foreign is in your body. 🦠

    There are a lot of positives for this surgery for Sophia and we want her to be able to live the best, longest life possible...

    However there also are a lot of risks with it like rejection in which sometimes they will need to re-operate and re-transplant, there’s also risk of infection and also the worst.. death.

    Now of course they have to go through with us all the risks, side effects and even worst case scenarios so we are trying not to let that take over our mindset just yet. 💫

    Today was a lot for both Jerry and I to take in 🤍

    To think of maybe being back down the path and reliving a similar nightmare as before...

    with Sophia being back in ICU, on breathing machines, ongoing tests, radiation, etc, and being put to sleep for a couple of days with the surgery and recovery afterwards was the scariest thought ever and just reminded us that this is just so unfair but is a huge decision for Jerry and I to think about and isn’t one we are going to decide on lightly. 🦋

    However we can’t be overwhelmed yet as this is just day 1 and we have many more days to come, meeting with many more people to discuss all about it....

    and we know we have to keep an open mind and think of our end goal ...

    Giving Sophia the best quality, but longest life possible 🌟

    #sophiathebrave

      0 comments  |  Login to leave a comment  |  Share this update

  • Please keep praying 💜     20 July 2020
    Posted by: Alesha Davis
    Main image

    Update- 🦋

    we had quite abit of a set back today with Sophia... and we’ve been trying to process the news!!!! 💔

    We got the results back from Sophia’s doctor on her chest X-ray on her lungs and videoscopy (video swallow study) and we have been told she has silent aspiration (milk going down the wrong hole- breathing hole) and her lungs are getting fill of milk from her oral feeding.

    This is a huge set back for us.. as this has been our one goal we have been driving for with Sophia.,. Not only have we been trying to get Sophia on as much oral feeding as we can so we can remove the tube, but we also have been trying to get her to live a semi normal life.

    This milk on her lungs is scarring her lungs which may end up making her have to live with breathing tubes for the rest of her life,

    it also can effect her having any future liver transplant in the future if we were to go down this road as her lungs wouldn’t cope...

    this has absolutely broken Jerry and I today and we have been trying to share the news with our close family today for there support during this really tough time...

    Sophia’s ammonia levels have also been rising up and down and haven’t been very stable the last 24hours so they are still closely monitoring these....

    she also has a scan set up tomorrow on her kidneys as they are worried these have been effected from these high ammonia levels... 😭

    However after all this sad news we are so so grateful for all the support we have around us,

    for her amazing metabolic doctors that have been so supportive and thorough with Sophia’s care and all the nurses she has had have been amazing,

    but yet we are so grateful for this strong girl we have!! 🌟

    Please continue to keep Sophia in your thoughts, prayers and meditations as every little bit helps 🤍🙏🏼 xxx

    #sophiathebrave

      0 comments  |  Login to leave a comment  |  Share this update

  • Sophia is back in hospital.      19 July 2020
    Posted by: Alesha Davis
    Main image

    2 days ago sophia developed a high temp and some other worrying symptoms. Sophia is now back in hospital undergoing tests.

    Will update when we can.

    Please keep praying for our #sophiathebrave 💜

      0 comments  |  Login to leave a comment  |  Share this update

  • Update from Brooke and Jerry - Sophias mummy and daddy      28 June 2020
    Posted by: Alesha Davis
    Main image

    A lot of people have been asking how Sophia is doing or about her condition...

    Everyone always has lots of questions about things which is totally cool too...

    she’s so lucky to have so many people that care so much about her already and are genuinely interested in her condition and if she’s going to get better... 💞

    So in saying all that I thought I would write a little blurb on Sophia’s condition to help you understand it a little more...

    Sophia has been born with a very rare metabolic genetic disorder called

    🧬 “Propionic acidemia” or “PA”. 🧬

    Propionic acidemia means that Sophia’s body is unable to break down amino acids properly she is missing a certain enzyme in her liver that metabolises protein which means if she consumes to much protein it turns into toxins.

    This toxic acid is called Ammonia.

    This is what makes her condition very dangerous. As the damage ammonia does to your body is permanent and irreversible.

    Her body will go into a metabolic crisis (episodes): It can cause vomiting, breathing problems, abnormal movements, seizures, swelling on the brain, stroke and coma.

    Metabolic crisis (episodes) can be caused from:

    * Eating large amounts of protein

    * Illness or infections

    * Going to long without food

    * Stressful events like surgery’s

    Every time Sophia has an episode she has risk of it affecting her these can include:

    * learning disabilities

    * Delays in walking or motor skills

    * Abnormal movements

    * Poor growth

    * Seizures

    * Death

    So it is very important that when Sophia does get sick or has an episode that she is taken straight to hospital for treatment as it’s a very serious condition in which the hospitals don’t treat lightly.

    Sophia is very lucky to have a massive team behind her helping her along the way with her growth and to keep her well.. she has her own doctor, nurses, dieticians, Speech language therapist, Occupational therapist and Physio’s.

    PA is a very rare disorder with roughly 1 baby every 4years being born with this condition in the world...

    on top of that - 30% of children with PA don’t live past the age of 4 and 80% not past 18years old.

    We still have a long road ahead of us and there is a lot of gene therapy being tested currently overseas in the US but is currently another 5years away.

    We also have the option for a liver transplant when she reaches 10kgs to help her be able to live a semi normal life but of course still comes with risks.

    Sophia’s life will never be “normal” and she will forever have to be monitored closely and be on a strict feeding plan.

    But right now all our plan is, is to enjoy each moment and day we have with her, take each day as it comes and just hope and pray for the best for her as we don’t know how long she is going to be with us. 🦋💫

    Happy to answer any questions if you have any more 💖

    #Sophiathebrave

      1 comment  |  Login to leave a comment  |  Share this update

  • Sophia is recovering well      12 May 2020
    Posted by: Alesha Davis
    Main image

    12th May 2020

    Today would of been Sophia’s due date... but luckily we were blessed with her slightly earlier...💖

    Baby Sophia has been doing really well however she is still recovering from everything... we are trying to teach her to take her food and medicines orally as she still has a feeding tube.

    The speech language therapist is coming to see her tomorrow to help with her sucking/swallowing reflexes and make sure all’s okay... So hopefully if all going well we will be able to remove the feeding tube in a few days 🤞🏼

    We are still waiting on an appointment for an MRI for her brain to see her activity and to see if they can pick up if there’s any brain damage yet.. but they won’t know a lot yet until she grows up and reaches her different milestones.

    We are hopeful there is little to no damage to her brain as she has fought this hard through this horrible disorder but hope she hasn’t been affected to badly.. 🤞🏼

    Baby Sophia will forever have this disorder growing up and will be constantly monitored and cared for throughout her life but we hope that we won’t have another episode like this ever again but we will never know what the future holds for us..

    Our goal right now is to take each day as it comes and to enjoy every extra snuggle and kisses we get with her!! 💞

    Please keep praying for our baby girl we still have a long road ahead of us but we are hopeful we will have her back home with us very soon... 💫

    #sophiathebrave

      0 comments  |  Login to leave a comment  |  Share this update

  • An update from Sophias mummy and daddy      8 May 2020
    Posted by: Alesha Davis
    Main image

    Update- 🌸

    Baby Sophia had another good day yesterday...

    She came off the breathing oxygen bubbles and is now breathing all on her own! 💫

    Sophia had her milk intake increased as her tummy’s been handling the food really well without her bringing it back up. She’s still feeding through a tube currently but hoping to try and get her to take it orally within the next few days.

    A lot more medicines have stopped that she was taking and her ammonia levels are a lot more stable. So hopefully these stay like this so doesn’t do anymore damage to her brain.

    We managed to finally have cuddles with her after days of not being able to, we also got to change her yesterday into some of her own clothes and she also moved into a new big girls bed as they are looking at possibly transferring her out of Intensive care and possibly into the high dependency ward at starship!

    We spoke to the Metabolic team yesterday about Sophia’s condition and all though we are still so overwhelmed with our new life we will be living with constant monitoring and medicines for the rest of Sophias life.

    We are staying hopeful that her brain hasn’t been affected to much and that she will still be able to live a semi normal life as she grows up, but we will never know until this happens...

    So we ask please keep praying for a miracle for our baby girl and let her keep proving us and the doctors wrong, that she can do this.. she can fight this horrible, horrible condition. 🙏🏼🦋

    We love you baby girl and we’ll never know why the world can be so cruel you just didn’t deserve all this!! 🥺 💞

    #sophiathebrave

      0 comments  |  Login to leave a comment  |  Share this update

  • Our prayers are being heard      7 May 2020
    Posted by: Alesha Davis
    Main image

    💜Update from Sophias mummy and daddy 💜

    Baby Sophia had a really good day yesterday and we are hoping for another one today.. 🦋

    Her breathing tube was removed and she has been breathing strongly on her own we even got to hear her little cry’s.. which was the best sound ever 🥰

    Her heart is still going strong, and her brain we are still unsure of how severe her brain damage is and we won’t know for a long time...

    But we hope and pray they have it wrong and our baby girl will continue to live a semi normal life just with this metabolic disorder.

    She has now started on her feeds through her lines and is being able to have my milk again which is so special and will helpfully build her even stronger...

    We still have a long road ahead of us but Sophia is so strong and a real fighter and is progressing so much everyday!!! 🤩

    Jerry and I want to Thank everyone so much for all the love, support, prayers, beautiful messages and donations we have received over the last few days, they have lifted a weight of our shoulders so we can just focus on being there for baby Sophia and giving her our positive energy 💞

    Tonight at 10.45 pm NZ time we will be graced with our final super moon of this year.

    We are riding a Scorpio Supermoon.

    The moon is already heightening everyone's true feelings, ending cycles and starting new deep intuitive ones. So please if you can watch it and do a little prayer for Sophia for her ongoing journey. 🌕💫

    #Sophiathebrave

      0 comments  |  Login to leave a comment  |  Share this update

  • Please keep praying      6 May 2020
    Posted by: Alesha Davis

    Please keep praying for Sophia at this crucial time 💕💕💕💕💕💕💕💕💕💕💕💕

    Update-

    Sophia has made great progress overnight she has woken up still abit dosey but she’s awake... so all your love and prayers are being answered 🙏🏼

    Please keep Sophia in your thoughts and prayers this afternoon at 2.30pm we have made another huge decision with the doctors to remove Sophias breathing tube and hopefully she will be able to breath on her own she will still have support with oxygen bubbles through her nose but she will need to be strong and be able to do the other breathing part on her own... 🤞🏼

    If she can do this on her own we are one step closer to her being even stronger...

    We still have a long way to go but this is one of her next biggest steps to make!!! And we need all your prayers and strength for her to do this!!! 💞

    We BELIEVE she can do it!! 💖

    Her heart is strong and her brain we are still unsure of if there is any brain damage or how serious it is but so far everything is picking up ok and she hasn’t had any seizures.

    Please make a prayer or keep her in your thoughts today for baby Sophia 🦋

    #sophiathebrave

      0 comments  |  Login to leave a comment  |  Share this update

Share
Share a link to this page to help spread the word

  Facebook

  Twitter

  LinkedIn

  Email

  Copy Link

  Embed

  QR Code

×