So Many Ups and Downs 28 July 2021
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