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Help Harriet with her much needed Medical Expenses

  • Harriet turns 2 Years old

      26 September 2022
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    I thought I would give an update on our wee gal Harriet who amazingly turned 2 this month. What a ride it has been.

    Since moving back to NZ she has been stable health wise other than seizures which she has daily.

    They are not large seizures but more subtle movements that can be undetectable if you didn’t know her well. Some of them distress her and she is medicated quite heavily to help control them. The hard part is the medications dull her little personality. It’s a difficult trade off as we have to medicate to control them yet each time we increase or add a new medication she loses a little bit more of her sparkle.

    She does however LOVE her food, especially bananas, cheese and avocados and her evening cuddle with Dad when he gets home from work. We feel so fortunate to have her with us and try to take each day as it comes. By the grace of God he has given us the strength and means to give her the best life that she can have.

    We want to say thank you again for the prayers, kindness and help that has been given to her and us. We wouldn’t have been able to get through the last two years with out it.

    In other news a younger brother arrived on the scene a few months ago. He has brought with him so much joy and cheekiness. We love him dearly.

    From Rob, Adiella, Harriet + Walter

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    • 09/10/2022 by Iain

      Happy birthday, Harriet.

      Great to hear you are all back in NZ, Adiella, and congratulations to you all on the arrival of Walter!

      Bets wishes,

      Iain

  • Harriet turns 1 Year old

      10 September 2021
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    Good evening all,

    I just wanted to share that Harriet is doing super well and has had a lovely day celebrating her first birthday today! What a miracle, we never expected her to live much past birth and now here she is one year later doing so well.

    She has also just had a tissue biopsy taken of her spots and depending on the genetic make up of them she may be eligible for a clinical trial drug that may help slow the progression of the spots that are in her brain and spinal cord (the dangerous ones). It would be amazing if she does qualify for it 🤞.

    Thank you all again so much for your help and prayers in her early months. We will never forget the kindness shown to us. It means the world.

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  • Harriet update 12/12/20

      13 December 2020
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    From Adiella:

    Here is a wee update on Harriet. Since being discharged on the 11th of November she had a week where her old surgery site wasn’t healing to the point she was going to need another surgery to stop the leaking. Miraculously on the 18th all leaking stopped and she has been steadily on the mend ever since! At her last follow-up appointment she had no signs of infection in her CSF sample and the surgeon was very happy with progress.

    I’ve been back at work for a few weeks (6 weeks maternity leave in Dubai) and Robs mum has been over visiting and is a HUGE help. Harriet will definitely miss her cuddles and I will miss her immaculate washing, ironing and baking skills. It’s been such a treat having her stay.

    We are booked to fly to NZ soon for Harriet to meet family. Christmas, my mother in-laws birthday and New Years will all be celebrated in isolation! Mum has her deeelish Christmas mince pies and cake on standby to post to our hoteI, true love right there haha. What a different world we live in these days.

    Harriet has started doing big gummy smiles. Here is a picture captured by our talented friend Arun, she is our little delight.

    Thank you all again for your support and prayers. Know that she is doing so so well and continues to exceed Drs expectations.

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    • 14/12/2020 by Margaret

      Safe travels back to NZ with your precious little daughter, lots of cuddles will be awaiting her in the New Year specially in Rocky Gully.

      Marg & John

    • 14/12/2020 by Iain

      So pleased Harriet is doing well, Adiella. Hope the trip home goes smoothly and you have a wonderful family time. Merry Christmas!

      Iain (Ward)

  • Harriet Update 6.11.20

      6 November 2020
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    Harriet has had a near 3 weeks unplanned holiday in hospital with meningitis poor little lady. The infection stemmed from her shunt and was just ‘unlucky’ according to her surgeon. She is recovering well now and will hopefully be discharged back home today or tomorrow. Yahoo!

    While in hospital her old shunt was removed early on and a new one replaced yesterday on the opposite side of her head, draining extra fluid into her tummy.

    She has had five star treatment while here with the nurses and Drs taking such brilliant care of her and being so gentle with all her tubes and drains in. Rob and I could also visit any time we liked which was fab. I think our vehicle could drive itself to and from the hospital at this stage.

    We are praying there are no complications with this shunt and are looking forward to some time spent at home and making plans to visit family back in beautiful New Zealand.

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  • Harriet update 24.10.20

      24 October 2020
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    From Adiella:

    Little Harriet has had a big week! She was admitted to hospital due to an infection in her shunt leading to meningitis. She has responded very well to antibiotics however had to have surgery on the 21st to remove her shunt to ensure the infection did not recur.

    She has a temporary external drain in place and will be on IV antibiotics for another 10 days. After the Drs are sure the infection has gone her surgeon will replace her shunt with a new one.

    She is feeding well and is not in any pain. The little button has the nurses wrapped around her finger with them singing nursery rhymes to her and tucking in her bunny beside her for naps. Rob and I can visit anytime we like. The team at the hospital have been absolutely INCREDIBLE and so kind towards all of us. We feel very grateful.

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  • Harriet update 19/10/2020

      20 October 2020
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    From Adiella:

    Harriet has been doing incredibly well and has been continuing to gain weight and have so many cuddles with friends and a few family members over the last few weeks. Lots of treasured memories have been created with a few outings and adventures had.

    Two days ago we noticed a reddening around her scar site and spoke with her surgeon. She has since been admitted, has meningitis and we are awaiting test results to see the treatment plan from here. The Drs and nurses have been absolutely incredible and Harriet is not in any pain.

    Otherwise she is doing brilliantly and continues to bring so much joy to myself, Rob and many others.A huge thank you for your continued prayers.l and support.

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    • 20/10/2020 by Margaret

      Such a wee fighter may she overcome this latest hurdle, prayers and thoughts are with you.

      John & Marg

  • Harriet update 6/10/20

      7 October 2020
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    Well our champ Harriet continues to amaze and do fantastically.

    She had a follow-up appointment with her surgeon yesterday and he was very happy with how the shunt was draining and the wound healing. He said “babies usually aren’t this alert at this young an age, particularly those with neural problems”. Go little Harriet!

    The paediatrician also assessed her and said all her blood work came back normal as did her other body system checks.

    She managed to gain 280g in the week that she has been home. Adiella attributes this to her rich COVID antibody filled milk but Rob assures her it’s down to his superior bottle feeding skills 😂.

    We are so please to announce that due to the overwhelming response and generosity of people who have shared, donated and supported Harriet, her hospital stay and surgery costs have been covered.

    Thank you so so much! The page will stay open a few more days and anything surplus to theses costs will be saved to help cover future follow-up care for Harriet.

    We will continue to post updates about how she is going on this page once it has been closed. She truly is a little miracle baby 💕.

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  • Harriet update 4/10/20

      4 October 2020
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    Harriet continues to do fantastically well! She is starting to look around a lot more and Adiella is convinced she has been smiling at her (Rob says she is just passing wind haha).

    She is sleeping well day and night and brings so much joy to her parents and family back home (lots of video calls happening).

    Her follow up with the Surgeon and paediatrician is now tomorrow and we will do another update with how this goes.

    Again, thank you soo much for everyone’s support, it is just incredible and is looking like it’s going to cover Harriets hospital stay and surgery costs. This is a HUGE blessing to Adiella and Rob. Thank you.

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    • 05/10/2020 by Jaqueline

      Harriet is such a cute little fighter, give her a big hug from me:-)

  • Little Harriet update 30th September

      30 September 2020
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    Rob and Adiella would like to say a HUGE thank you to everyone for their generosity and kind words. They have been overwhelmed with the support shown and feel as if a weight has been lifted off their shoulders. Thank you all so much.

    Harriet is back home now and is doing so well post Surgery. The fluid in her brain continues to drain reducing the pressure build up. She is still defying the odds feeding and sleeping perfectly. Adiella is enjoying endless cuddles and Rob has mastered the art of bottle feeding.

    Her next follow-up appointments are with the surgeon and pediatrician on Sunday. They will monitor the shunt drainage and assess her development/talk about future care.

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