Warrior Princess Luna, Maryborough, QLD Videos
Videos by Warrior Princess Luna in Maryborough. Processing the life of my complex daughter by writing to her in diary entries.
My speech at the Katastrophy Wives event ๐
Thank you again so much for inviting us & letting me tell our story
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My speech at the Katastrophy Wives event ๐ Thank you again so much for inviting us & letting me tell our story
We had the best day out as a family! These are the days I live for, we dont get many days out like this where we all get to go to events! My heart is so full ๐ฅบ๐ฅบ Thank you so much to the Ralley For A Cause & Dunga Derby for having us ๐๐ Staib Tribe Designs Dunga Derby by Rally for a Cause #staibtribedesigns #makingmedicalpretty #market #rallyforacause #dungaderby #bootbbq #fyp
We are heading to Brisbane tomorrow for an ENT review after Lunaโs grommet placement back in January. Iโm praying for an uneventful trip, we donโt have much luck with those & last time our stay went from 5 days to 2 weeks due to illness. ๐
Cameron was rained out from work yesterday so he got to do physio with Luna while i got some market prep done for my small business. Was so nice watching him see the progress our sweet girl has made since last time he got to be home for it ๐ฅบ๐ฅบ๐๐ God shes amazing! #warriorprincessluna #kleefstrasyndrome #physio #strong #littlewarrior #daddydaughter #myloves #fyp #fypใท
We havenโt done any feeding for a good solid few weeks due to being between therapists & being sick, but today she shocked me with how far she has come after a solid break! ๐ฅบ๐ฅบ๐๐
There has been a lot of moments this week I have waited so long for. Watching my two children be siblings & play together, Luna laughing at Forest run around like the crazy boy he is, having their first ever bath together & watching Forest get cranky at Luna for being in โhis bubbleโ. 14 months I have waited for my children to be โnormalโ siblings & engage with each other, itโs such a bitter sweet feeling, warming my heart with joy but also sadness as this wasnโt how I pictured their childhood to be. Iโm scared Forest with resent Luna as he gets older, he already misses out on so many things because everything must be perfect in Lunaโs world to attend a gathering or even go to the park. I hope their bond grows stronger & as Forest gets older he understands I tried my best. ๐
The end though ๐๐ Luna is sounding wet at the moment due to her teeth coming through, Iโm currently having to suction her 10+ times a day which is much more then usual! She has been very out of sorts the past few days but today seems much more her happy self! Luna has learnt how to blow raspberries & has become very sassy ๐ she now has 6 teeth! She got 5 of those in a 2 week period! ๐ณ Her UTI is successfully being treated with the antibiotics too ๐ and we managed to stay away from hospital! ๐ #warriorprincessluna #kleefstrasyndrome #warrior #bubbles #cutie #tubiebaby #oxygenbaby #medicallycomplex #fy #fyp #fypใทใviral
Itโs been a big day, but we are closer to getting the answers we need ๐ #WarriorPrincessLuna #kleefstrasyndrome #fypใทใ
Tonight Luna is doing her formal sleep study! This is not an EEG, but it does monitor her sleep stages, O2 levels, CO2 levels & saturations. Wish us luck! #WarriorPrincessLuna #sleepstudy #kleefstrasyndrome #fypใทใ
Lunaโs new trick! She is such a little sensory seeker ๐๐ #WarriorPrincessLuna #kleefstrasyndrome #fypใทใ
How is this video only from 3 days ago? ๐ช Luna has slept pretty much all day & still having temps & breathe holding episodes. Things change so quickly in our world ๐ช #warriorprincessluna #kleefstrasyndrome #hospital #hospitallife #broken #warrior #fighter #oxygenbaby #medicalbabe #medicalmum #lungdisease #capcut #fypใทใ