turning two
Posted on May 21st, 2011 by Tracey
happy birthday, sweet Jovie xx
Posted on May 21st, 2011 by Tracey
happy birthday, sweet Jovie xx
Posted on May 18th, 2011 by Tracey
continuing on with Jovie’s appointments – an EEG that was scheduled today for 8:30am at the Prince of Wales Hospital at Randwick.
for this particular EEG, she had to be sleep deprived, which means I was going to be sleep deprived too! her usual bed time is 8-9pm but we managed to stretch it to 11pm and she woke at about 1am aswell. (they ask you to do this so that you’re likely to fall asleep during your test as needed).
being that we live over in the north west and peak hour traffic to the city is HORRID, we woke her up at 5:30am, headed off at 5:45am and thankfully cruised through the traffic all the way to the city, under the harbour and over to Randwick. arriving at 6:30am, dad (who came with Jovie and I) and I sat in the children’s hospital for a coffee and to feed Jo some brekkie. (she was sooo happy – I’ll have to upload the video from my iPad!)
the time passed pretty quickly and we walked into our appointment right on time. they got me to sit on the reclining chair with Jovie on my lap, and expertly placed the 21 sensors on various places of her head. thank goodness for the stretchy cap they put on her head, i think she would of rubbed all 21 of those things off in 2 minutes flat.
one of the first things they tested her with was a strobe light – which is supposed to trigger seizures etc and they can measure her brain waves. another test is a loud noise to react too and i’m sure there was other stuff but i was too busy trying to keep that darn cap and sensors on her head, lol.
the room that we was in was specially decorated for kid’s – there wasn’t a bare inch of wall anywhere! i spotted twilight posters, XENA, cars, wiggles, animal charts, monkeys hanging from the ceiling and anything else you could think of that might entertain a kid for a little while. i think that kind of room is either going to be reallly awesome, or a sensory overload!
after 45 minutes, Jovie didn’t drift off to sleep as planned but we flipped through her favourite book & grandpa fed her cookies to keep her calm and then everything was done. we don’t get the results until we see the paediatrician in July (unless there’s something wrong and he’ll call me earlier) and while i was looking at the charts as they showed up the technicians computer, i have no idea how she went.. fingers crossed!
Posted on May 15th, 2011 by Tracey
firstly, thank you for all the messages of support over the last week for Jovie and our family – it’s comforting to know that you’ve reached out to me, when i think i’m really going to need it.
an update of sorts – on Friday around lunch, i got a call from our pediatrician’s office. there was a last minute cancellation and would we like to bring in Jovie at 2pm today? UMM, YEAH. i’m very very lucky to have a great boss (who has been filled in along the way about what is happening), and that Jovie was in my parent’s care — so after rushing to get some work out of the way, we were able to get to that appointment 3 weeks earlier than scheduled.
feeling a bit under prepared (I had counted on those 3 weeks to takes notes so i knew what to ask), my dad, Jovie and I meet the Dr and he gets right down to it – why are you here today? we’ve received questionnaires about development from our local GP, so i know what he’s asking – is she talking? not at all. can she pick up a spoon? no, she’s can’t. can she stack 3 blocks in a tower? sir, i don’t think she even knows what a block is.
(i don’t say these things to insult my daughter, if that’s what you’re thinking – it’s just me being honest about the situation).
he asks more questions, brows furrowed in concern. we strip her down to her nappy and he checks that everything is there (it is, thankfully). after he takes her height down, Jo manages to escape and run (still in her nappy only) back down towards the waiting room – oops – but it manages to show off how she’s walking – she has a slight issue with her gait, he notes.
dressed again, Jovie is happy to walk about the Dr’s office while he sits down and starts to get serious – there’s definately something going on with her. he can’t make a formal diagnosis without further tests – neurological, hearing and eye assessments, blood test and urine test – but he tells us that we’re going to start with the worst case scenario. worst case scenario? i won’t go into here – it’s too early for that – but when your doctor warns you that your child, your baby girl, may die from it – you’d understand why i was up all night panicking and terrified. (i’ve told Regan not to google it, at all, right now. it won’t help). other possibilities include autism, which we’ve suspected ourselves. he’s referred us straight into hospital departments instead of waiting for the side-department’s availability. we’re getting things done as quickly as we can.
so to stop myself from self diagnosing, i’m concentrating on the next 8 weeks – Jovie’s had her first blood and urine test already, and we have a neurological test booked for Wednesday morning at the hospital. it’s a self deprivation test, which means I’m also going to be sleep deprived (putting her to bed late and getting her up realllly early) but HAPPY to be getting in there so quick. the hearing and eye assessments – i’m waiting to hear back from them for the appointment date, but hopefully it will be done in the next 2-3 weeks also. then in mid-July when we see the pediatrician again, and hopefully have all the test results, we can look at putting a name to whatever my Jovie is experiencing.
i won’t lie – i’m not as brave as I might sound or look on the outside. on the inside, i’m a bundle of nerves. i’m worried for Jovie. i’m crossing all my toes and fingers that it’s not as worse as they’ve suspected and if you can, can you cross yours too? xx