04/07/2025
Dear Luna,
It’s been a little while since I’ve written, we have so much to catch up on!
I have been working hard trying to fundraise & get donations for the Kleefstra Syndrome fundraising event in Sydney in September. I’m so excited to say we have raised over $300 so far & almost 3 hampers of products for the silent auction!
Fundraising is a lot harder than I thought it was going to be & honestly I’m not sure if setting a target goal so high it will be possible to achieve but I will give it my damn best!
We have our accommodation booked for our road trip so we are actually doing it! Like I know we said we are but it’s real now if that makes sense. And I’m so bloody excited!
You have been busy doing your therapies, making small progress but I feel like you are going through abit of a plateau stage, usually you will stop making milestones for a few months & then learn some new skills then step back a couple of steps before stepping forward again as such. It’s kinda like a 5 steps forward 3 steps back plateau then 1 step forward kind of situation you have going on but you are happy & thats all that matters.
You are cutting molars so your body is probably working overdrive on that, focusing all your energy on cutting them & grinding your teeth 24 hours of the day, I really need to buy some earplugs lol. You have been teething for a month now & only just finally broke the gum, I really hope they give you a break soon & come through completely.
We are officially 1 month into winter & have managed 2 illnesses at home, it’s crazy to think how far we have all come between you being well enough to stay home & us having the training & resources to keep you home. It’s nice having our family under 1 roof & not feeling torn between here & the hospital walls. Not to mention it has been 12 MONTHS since we have had an illness acquired admission! What an achievement!
To think back to the first 12 months of your life to now I remember thinking things were never going to get easier, we were stuck in a dark whole & our whole world was falling apart over & over again, the first 12 months of your life was torture for all of us. Im so proud of us for getting through our darkest days to make it here.
Today we got to meet the handsome little Kolton’s Story Book & boy oh boy he’s a little sweet heart! Kolton has Down syndrome, I feel like I could see you looking at him taking him all in & relating to the feeding tube, watching you both study each other with nothing but love in your eyes. There really isn’t anything like watching 2 special little people interact with each other, it’s such a wholesome feeling.
Next week we go down to Brisbane, you will be going in for a sleep study to see how your central sleep apnea & obstructive sleep apnea are traveling since your surgery. I have a good feeling about this as you have had barely any apnea episodes since recovery & even with being unwell. I’m praying we may be one step closer to being oxygen free for awake windows atleast!
We will also be seeing other specialist teams whilst there, ophthalmology, ENT & Respiratory. I have a good feeling about this trip!
All in all things are calm here atm, touch wood they stay that way.
Keep being the little light you are my moon child, I’m so proud of you always.
Love always,
Mum
💜
