we were lucky enough to get a call from our paediatrican today, there was a last minute appointment available so we could come in today instead of waiting until next week, hooray!
the news? EEG, blood, urine, hearing and eye tests – all clear, no problems which is great! but still, there is still the issue of what is going on, so we’re booked in for a brain MRI in about 4 weeks time at the hospital, and then about 4 weeks after that is our appointment at the Children’s Development Unit at Westmead. then 4 weeks after that, we ‘should’ have a diagnosis. (again unofficially, he’s said that it’s looking like autism on the more severe side of things but unofficial diagnosis’ doesn’t get us anywhere officially).
so give me 3 months, i might not have any hair left from the stress, but we should have something to go with. should.
‘should’ is a really tough word to use/take when it comes to your children’s development
i’ll be honest and say it’s been a bit of a struggle to wait the 2 months to get here, but in reality this diagnostics stage may take longer than the next 3 months we have scheduled already. i have to find my patience, and i need to dig deep which is hard when all my thoughts are with getting Jovie (and us) the help she needs. every day i feel like just throwing everything to the side to just concentrate on her, but in the meantime there’s bills to pay and responsibilities not only as a parent, but as an adult to not give up when the going gets tough.
so we wait. somewhere in between.
Jovie’s made a baby step forward with her speech – new sounds! she really didn’t have any before, so hearing new things coming from her is so exciting. she’s even said ‘da da’ once, and i think in context which is AWESOME.
(it’ll most probably not sound like anything to you, but this is where we’re at currently)
slow and steady 🙂
she has her hearing appointment on thursday and then about 4 weeks until we can some sort of diagnosis! in the meantime, we’re actively trying different ways to stimulate her play and speech skills – it’s so interesting having to go back to that age when they’re just starting to learning all these things. Jovie is about 14 months behind schedule (her speech and other skills are about the same as a 10 month old we think) but we’re very optimistic for our beautiful girl!
i’ve been reading other blogs, about kids the same age as Jovie and the amazing things they’re doing and saying – of course i’m envious but at the same time, Jovie is my Jovie and she will be great no matter what.
Edited to add: wouldn’t you know it, an hour after posting the video above, Jovie makes more new sounds!
more jovie sounds! from Jasper & Jovie on Vimeo.
the trouble with being a mum, is also one of the most wonderful things about being a mum
it’s only been 2 weeks since we’ve started down the road of referrals, test and diagnostics – and i’ll admit i’m not the usual Tracey lately. most day’s i’m okay, and then other days i’m in a rut. last week was worse, at least this week i’m managing my anxiety more. does not make for a professional day at work! I’ve also had bad mouth ulcers and pimples galore lately, not good!
i’ve been thinking about it, and what i feel is useless and helpless. not in a ‘oh i can’t do anything right’ or ‘woe is me’ sort of way. i think i’m the kind of person who is impatient, and when has something to take care of – wants to take care of it NOW.
i’d rather be spending my day with my daughter, trying to teach her things and helping her as much as I can.
i feel like i can’t sit down until we have a diagnosis and until Jovie is getting the help she needs. i feel like there’s so much to do and we haven’t started yet.
so i guess this is what being a mum is about! neverending worry coupled with undying love.
Jovie is doing well, by the way 🙂 she had her eye sight assessment on Wednesday and she has great vision -no issues there! next is her hearing assessment, then another paediatrician appointment in the next 6 weeks. we also have an appointment for the Children’s Hospital in SEPTEMBER (eeek feels so far away) which is no doubt going to add to my anxiety. thanks for your tweets, messages and emails x
