define('DISABLE_WP_CRON', true); _sh1ft.org » a (scary) step forward

a (scary) step forward

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

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jamieanneMay 15th, 2011 at 3:58 pm

Hi Tracey, I have been following along, but I really don’t know what to say that others haven’t already said. I’m thinking about you and little Jovie and I hope the diagnosis will come soon so you will know what is going on.

melissaMay 15th, 2011 at 8:24 pm

Oh Tracey. I’ve been thinking of you and wondering.

I’m so sorry that the doctors appointment raised more question than answers – and worrying ones at that. I don’t know what else to say other than that I’ll be thinking of you all and sending positive thoughts that all the tests go smoothly and you get the best possible outcome.

Melissa

Wanda LynnMay 16th, 2011 at 12:13 am

“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”

Being honest is the best thing for her, even if it kills you to admit or say it. I went through the same thing and I still do. My son is 8 now and we still have issues, we always will, but being honest about them to get the help he needs is the best thing!

I am sorry to hear that it might be worse than Autism. Hopefully it isn’t and I will be keeping all of you in my thoughts!

FionaMay 16th, 2011 at 9:02 pm

Hey hun.

If you need an ear that is both a professional and a friend, flick me an email. (I’m a speechie by day so work with a lot ofdifferent delays and disabilities so can tell you ‘stuff’ if you need)

x

Kelly@LIfe with a MiniMay 17th, 2011 at 12:53 am

Tracey,

I couldn’t read all these and not say something. I’ve followed your blog for years now. I am so sorry to hear about Jovie. I’ve been thinking about you guys all last week. I kept coming back to check. I wish and pray for the best diagnosis possible. Try to rest well, eat well and take care of yourself too. xx

yimaMay 17th, 2011 at 10:20 pm

Dear Tracey, I am thinking of you and little Jovie. I am really glad that things are being sped up for you, I hope with all my heart for the best possible diagnosis. Take it easy and avoid the internet, it will just scare the hell out of you. Crossing all my fingers and toes. lots of love Audrey