One of the biggest misconceptions I think people have about our journey is the speed in which we receive information. We have bursts of appointments and then huge gaps before we can learn more. Part of that is we just have to wait for her to get to a different age before we can assess and the other part is specialists are so darn hard to book.
I’ve been told to come back in 6 months for a follow up to hear there is no available appointment for 10 months. As a parent it’s really hard to hear that sometimes your child is not a priority in the scheduling hierarchy. In many ways it’s a good thing that they feel your child is well enough to wait, but this can also mean that you don’t get more immediate services or care path plans in a time when early intervention is everything.
I am very grateful for our team overall and I’m thrilled that we have therapy to fill in to be another set of eyes in the meantime.
Just hanging out, transformin’. Only one left to split it’s exoskeleton. Watch the one on the left that just shed as it dances around! 🐛🐛 They are such beautiful jewels. I am so curious about how they can decorate themselves with jade and gold. What constituents from a living organism can produce gold leaf??
Another scan day done and dusted 👌 MRI & CT under GA, and for the first time ages he did it with no pre med! First scans in the new hospital and it’s so much nicer, check out recovery with a view of the trees in Kings Park 😍 #suchachamp#andnowwewait#wehatethewait#thepuffycheeksaga
Here it is! My real life #SISwimSearch casting video! Thank you so much @si_swimsuit for this opportunity! A humongous shout out and thanks to the end of eternity to @bdean201 for putting this dope video together so quickly! #AndNowWeWait 🤞🏽