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The greatest gift for Grace.

  • ERCP a success

      10 February 2023
    Posted by: Jessica Paterson
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    We have had a very busy last month, with the whole neutropenia episode, the reaction to the GCSF injection and then the kidney decline, but we managed to get up to starship for Grace's routine ERCP procedure and.......... it all went really well.

    They have removed the plastic stent and replaced the metal stent, so she is good to go for the next 6 months or so. I have included images of her new liver days post transplant vs yesterday and the improvement from the stenting. It's all abit medical, but if anyone is interested just message me and I can explain.

    We went to Crystal Mountain this afternoon and managed to purchase some nice sparklys on our visit.

    We recieved Grace's liver back today also which is a very weird feeling, something that was so evidently killing her but so desperately trying to keep her alive at the same time.

    When we have had time to accept and let go of this part of Grace we will bury it under a plant of Grace's choice.

    Looking forward to driving home tomorrow ❤️❤️❤️

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    • 11/02/2023 by KENNETH

      Go well...you are all doing amazing...my thoughts are with you

  • We made it home for Christmas

      29 December 2022
    Posted by: Jessica Paterson
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    We are 8 weeks post Transplant tomorrow and Gracie is doing so well.

    We managed to escape home for Christmas, as Grace's progress was so good.

    Most of the cares she needs are able to be done at our local hospital or blood centre, so with the help of our beautiful district nurse Brenda we are moving along nicely.

    All of the LFT's are in normal range which is so weird, but a good weird 😊. However her GGT is still up a fraction, but we have been told that the GGT will always take a long time to normalise following a transplant.

    Her hemoglobin has been slowly rising with the help of some iron pills and her skin colour is looking great.

    Her wound has healed over incredibly, hopefully no keloid scarring to follow.

    We will be back to Starship at the end of January for another ERCP to remove the plastic stent and check on the metal one. We really hope that these stents are working and will not have to be a permanent thing.

    Grace's Tacrolimus levels have only had to be adjusted once, it seems her little body has accepted her new parts very lovingly.

    She has a new found energy for life, is no where near as hard to wake up in the morning, she is enjoying food again and she loved eating as much and whatever she wanted on Christmas Day without any Creon or Insulin all thanks to her fabulous new Pancreas.

    I really think that we all take for granted how well our organs work when we know no other way.

    Such a shift in the way we look at things now, and not something I'm sure I can explain

    It's so lovely to have been able to update you all

    Jess

    Grace's mum

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  • Grace has a new Liver and Pancreas

      25 November 2022
    Posted by: Jessica Paterson
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    I thought I would catch everyone up.

    We got the life saving call on the 3rd November for Grace's new organs.

    We made our way up by car late that night arriving at 5am on the 4th November. Grace was wheeled into theater at 10:35am to begin her new life.

    It has been a rough few weeks with 5 General Anesthetics' to take liver biopsies and 2 ERCP's to Stent her liver as there was narrowing between donor liver and graces liver ducts.

    She is doing well now and much more settled. She has moved out of the hospital and down to Ronald McDonald house with us now so it's nice to together as a family again.

    Afew months of hectic treatments and clinics ahead before we can actually go home, but we are all living in the moment.

    Regards

    Jess (Grace's Mum)

      2 comments  |  Login to leave a comment
    • 25/11/2022 by Jules

      This is absolutely awesome news!!!! you're a real warrior Grace, you'll be home in no time 👏👏👏👏 ❤️❤️❤️

      All the best for your future and love and respect to you and your family Jess.

      From the Skedgwells ex Midhirst primary students 💪

    • 30/12/2022 by Jules

      This is just fantastic news , what a warrior you are Grace 👏👏👏👏👏👏👏

  • Transplant time!

      4 November 2022

    Tonight the call came, a call I wasn't sure we would ever get.... They have a liver and a pancreas for Grace! This news comes with so many emotions.... Joy that she is getting a second chance at life, fear, as this does not come without considerable risk, and sadness for there is a family out there who have just lost a loved one and who have chosen to donate their organs so that others, including Grace, can live, such a decision is unimaginable and my heart goes out to them. Grace and her family's life will be turned upside down, as I type this they are heading to Starship and are expected to remain there for many months, they need our support now more than ever, if you can help please donate, if you can't financially assist PLEASE SHARE! (Jess has given me permission to share this, please keep them all in your prayers, especially over the coming days and weeks).

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    • 04/11/2022 by Jules

      Yayyyyy this is amazing news!!! And of course love and respect to the family of the donor ❤❤❤

  • Admission

      12 September 2022
    Posted by: Jessica Paterson
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    Gracie has grown some considerably large amounts of "lung oysters".

    So we are in hospital for 2-3 weeks. Because she is waiting for a new Liver and Pancreas, we want to hit this hard and hopefully slow her lung function decline.

    The worse her lungs are the harder it is to stay healthy for transplant.

    Hopefully we leave the hospital better than we have come in, although she is still all smiles 😃

    "There is nothing in a caterpillar that tells you it is going to be a butterfly" 🦋

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  • Seconds

      1 September 2022
    Posted by: Jessica Paterson
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    9,849,600 seconds waiting for a second chance at life. Seconds have never been so precious as they are right now. Lunch with this fantastic human yesterday. Can't wait for the call to begin her new life 💛💛💛

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  • Our beautiful girl

      3 August 2022
    Posted by: Jessica Paterson
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    To the mothers and fathers like me who mother children with medical fragility:

    I commend you:

    ~ for all of the times you got up in the night to soothe an inconsolable child. Neurological irritability is the devil, making a mockery of us every single time we rock and comfort our children in vain.

    I acknowledge your patience:

    ~ for all of the times you have been physically exhausted and injured from lifting and carrying your child

    ~ for all the times you didn't curse when you dumped stomach content on yourself or the floor

    ~ for all the times you wanted to scream but instead held it together again and again and again

    I honour you:

    ~ for your determination in always finding solutions and answers to seemingly insurmountable problems (or at least never giving up on finding them)

    ~ for creating a safe and happy environment for your other children in spite of your fears and worries

    ~ for managing a home or a job or a friendship or a marriage on top of all that you manage

    ~ for courageously facing a future that is bleak and still maintaining a sense of hope....no matter what

    I praise you:

    ~ for finding strength and resilience that I know you had to dig deep to unearth

    ~ for finding humour when laughter seemed counter-intuitive

    ~ for weeping in the quietest moments when you would rather read a book or shave your legs but instead you tend to your grief

    I salute you:

    ~ for making this unique kind of mothering look effortless

    ~ for bravely rising up again and again even when throwing in the towel feels like a viable option

    ~ for taking the new moms under your broken, battered wing so that your wisdom may make their journey a little less harrowing

    I bow to you:

    ~ for caring for your child through tests, trials and experimental drugs

    ~ for sitting vigil knowing that your child's days were coming to an end

    ~ for the unimaginable broken heartedness you endured upon your child's death

    ~ for waking up each morning and continuing to live without them

    Today I celebrate all of you:

    ~ for demonstrating the meaning of MOTHER which comes down to unconditional love

    ~ for being the incredible mother that you are with all of your strengths and weaknesses, talents and imperfections.

    May you fully understand the sacredness in fiercely loving your child without ever feeling little arms around your neck in a hug, hearing the words "I love you" or receiving the gift of hand picked dandelions.

    I am honoured to be in your company.

    Copied from another amazing CF mum ❤

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  • Birthday

      10 July 2022
    Posted by: Jessica Paterson
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    We celebrated Graces birthday with family and friends yesterday. Grace loves Harry Potter like white on rice. So we all dressed up and really got into the spirit of things. The girl in the picture with Grace is her bestie from before they knew they were friends. She has stuck by her side through everything and we are so blessed to know Grace has her by her side for life.

    Moments like these have always been special, but this one is extra special. Making amazing memories like this is priceless.

    And when God made you, he said, "When she'll conquer her demons, I'll stand right beside her."

      1 comment  |  Login to leave a comment
    • 10/07/2022 by Jules

      Wonderful ❤️

  • Grace's NG Tube

      10 June 2022
    Posted by: Jessica Paterson
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    Our beautiful girl, had the tube placed that she so much hated the thought of. But we have come to the point that she can no longer maintain her weight by eating so we need to supplement it somehow. I never knew it could be so hard to help someone understand their mortality, especially if it is something in others eyes so tiny. Grace in her mind would have preferred to have an invasive gastrostomy over a tube. I will never admit to knowing how she feels and her reasons, but this one has left me stumped.

    I will not be another flower, picked for my beauty and left to die. I will be wild, difficult to find, and impossible to forget.

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