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Madi's fight for normal

  • So Many Ups and Downs     28 July 2021

    Posted by: Trudy Harwick
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    It has been a while since I updated but there has been so much happening. Madi is on 2 types of low dose Chemo. We give her a injection every Monday and then every second Wednesday she has a transfusion at the Children's Ward.

    Madi was being weaned of her steroids but was not going well. She has decided to slow down on making the natural adrenaline therefor the steroids had to be increased. Not to the original dose but still enough to bring make the dreaded Roid Rage. She is currently on 9 different meds that we give to her through out the day and boy is it exhausting coming up with different a new ways of giving them to her. She is generally pretty good taking her meds but there are a couple she absolutely despises so we have to hide them in something else.

    Through the money received from your amazing generosity we have bought her a new car seat, her very own Samsung Tablet, a whole heap of thermal clothes, a new bed, mattress, bedding, and whole heap of stuff to keep her busy and amused out here on the farm. She absolutely loves it all and sometimes we will walk into her room and she will be serving her teddy and Emma doll Tea and Cake at her cafe, or reading a book or just doing puzzles.

    We have done all we can to keep her protected from all the horrible bugs going around but sadly she has contracted the RSV bug. She is on what we call maintenance antibiotics which she has Monday, Wednesday and Friday and thankfully that has been helping keeping it from getting very serious. She does have a mild case and we are endeavoring to do everything we can to keep her safe, warm and protected. Makayla has stepped back from work at this time for Madi safety. If Madi was to get the full force of the virus she will be sent straight to Starship.

    Madi is so active on some days and I love just watching her running and dancing and generally just being a kid. But at tea time we give her some Ibuprofen and Paracetamol as we know once she quietens down she is going to start feeling the pain. She loves being a Ballerina and we will put some YouTube videos on for her which has a lady taking wee girls her age for class lessons. Madi loves dancing with them. Her new obsession is Fire Engines and she will run around the house with this red tomato slice (a wooden toy) up to her ear yelling "Quick it a emergency, there a fire" so the other day we bit the bullet and bought her a Paw Patrol ride on fire Engine and she is obsessed.

    Honestly I wish everyone could spend just one hour with this little warrior. She certainly puts things in perspective. She is so brave, resilient, loving, bright and funny. She is the BEST.

    You can follow Madi's journey more closely on the Instagram made for her by Makayla. @madsfightfornormal

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  • Hectic week     9 May 2021

    Posted by: Trudy Harwick
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    Well it has been a hectic week. Makayla ended up going to hospital by ambulance as she could not stop vomiting and was bringing up some blood. They doctor said that her stomach acid is affecting her stomach lining which is causing the pain and vomiting. Madi was very upset seeing her Mum so sick and being taken away in an ambulance. Makayla is home now and resting.

    This whole experience has taken quite a toll on Makayla, she is very anxious and at times over whelmed. We all are trying to do our best to reassure her that she is doing a great job. Makayla has never been good at accepting help as she does not like putting people out but we all are reassuring her on a daily basis that we all are doing what we can because we want to.

    Madi is having a really good day today and is full of cute smiles, cheeky grins and a sassy attitude. I really love these days as she can just be a kid.

    Makayla is overwhelmed with the generosity of every one and just want s you all to know that she is so appreciative of everyone's generosity.

    Thank you all so very much

    Kia Kaha

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  • 1st May 2020 - PIC line insertion     1 May 2021

    Posted by: Trudy Harwick
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    Madi went into hospital on Tuesday 27th April to have her first dose of the new IV drug and her PIC line insertion. After a few false starts she had PIC Line inserted this morning. She arrived home this evening and was so pleased to be home. Honestly this little lady is such an inspiration. She is strong and full of sass. She needs to go back down to the hospital on Wednesday next week to have her line flushed and Makayla is going to learn how to flush the line so she can do it at home. Makayla has more strength than she believes she has and is doing a fantastic job. One of the nurses told Makayla that Madi was sent to her for a reason and that Madi is lucky that she has Makayla as a Mum and every word of that is true. We are all here for you Makayla and Madi xo

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