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Kyran's Story


Fondest Memory:

I would have to say celebrating Kyran 5th birthday at Sandstone Point was our most recent and fondest memory to date. We camped for 3 days with family and friends, and celebrated Kyran's big day with 'Bluey', and blue fairy who entertained all the kids and adults. We had approximately 100 people who laughed, ate, had drinks, and reminisced about our amazing boy.


Favourite movie:

Any Disney movie is usually a hit.



Favourite activity:

We love going camping. We bought a camper trailer one and a half years ago and have camped from the Gold Coast, all the way to 1770. We try to go away for a few days every month, however covid has tried its hardest to stop us. Before the camper we tried to get away as much as possible. We've taken the kids to New Zealand in 2017 and we have done a huge road trip to Cairns where we stayed at Palm Cove in the Ronald McDonald retreat. It was a huge journey, but we loved it.


Favourite song/album: I love 'somewhere over the rainbow'


Favourite family tradition:

We don't have any traditions; however, we all sit at night together and have dinner. Even though Kyran doesn't eat, we bring him to the table, so we are all together.


Quote:

Live each day as it comes and enjoy every single precious moment.


On Saturday 28th of July 2018, Kyran had a very special Friendship Ceremony with his best friend Charli. Kyran has Early Infantile Krabbe Disease and through numerous hospital visits struck up a very special friendship with Charli, who was often there at the same time. Their Mums, Louise and Carissa also became close, supportive friends.

Day in the life:

Kyran normally wakes around 6am. Change nappy then we have cuddles while I have a cuppa until 7am.

  • 7am meds and first bottle via PEG.

  • 8am meds and feed flush.

  • 8.30am morning routine (intermittent catheter, creams applied for eczema, eye drops, cough assist machine, physio, preventive puffer and get dressed for day.

  • 9am time in standing frame/ drop sisters to school.

  • 9.30am out of stander

  • 10am 2nd feed boles for the day

  • 11am flush feed and extended

  • 11.30 rest time.

  • 1pm meds and 3rd feed

  • 2pm flush feed and extender

  • 3pm pick up sisters from school

  • 3.30pm bath or shower. Catheter and creams for eczema. Eye drops and preventive puffer.

  • 4pm 4th feed, girls’ homework, and swim

  • 5pm meds and flush feed and extender

  • 5.30pm dinner, showers for other kids.

  • 7pm meds and 5th feed.

  • 7.30pm Kyran usually goes to bed as do his sisters

  • 8pm. Meds and flush feed and extender

  • 9pm meds and 6th feed for day. Continuous feed for 4 hours. Our bed time.

  • 1am. Meds and flush feed and extender. Bed till morning. Start again.


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