Tuesday, May 25, 2010

Isla had an appointment with Dr L today to review her kidney ultrasound and abdo xrays from 2 weeks ago. Background to these tests, Isla had incontinence following Botox last November - cause unknown, but suspected Botox spreading from injection site. Dr L hadn't had any reported cases of this and was quite perplexed and concerned, hence the tests.

So, we're about to head out the door when the phone rings. It's a lady from the Dept of ACDH. Sh was lovely, but did mention that Isla doesn't qualify for anything from them because she doesn't have an intellectual impairment....but hang on, what about her physical one?

Her advice? Try MDS {our local disability service providers}. I'm sure they'll be of great help {note sarcasm here}. I have emailed them, I can't wait to hear them say she's not eligible.

Why is this so difficult? Why aren't physical disabilities being taken into account for these types of Departments? Why are these kids {and adults for that matter} forgotten? Where's the equality?

We head off to see Dr L. His other appointments are running late so it's a perfect opportunity to discuss things with him. First and foremost, he goes over Isla's xray and ultrasounds. No problem with her kidneys and the way they drain {phew!} she does, though, have a compacted bowel which he believes is putting pressure on her bladder and causing the incontinence. Can see a tiny smile of relief on Dr L's face at this news! We need to see or Paed, Dr F for treatment.

Dr L mentions he's "heard through the grapevine" that Isla doesn't have access to any services. I have a total panic thinking he's been reading my blog, {I am going back in my mind thinking, hoping I have ben nice!} and he says that the wonderful Orthotist, Felicity, that made Isla's new "helpers" had spoken to him about it. Bless her {did I mention she has new helpers? They're "rainbow" and she loves them}.

Felicity is wonderful, really wonderful. She asked all the questions I'd wanted someone to ask me, she listened, and she acted on it. This never happens! She's amazing. I can't wait to see her in 2 weeks at Botox and thank her.

I digress.

Dr L asks about how she gets around school. I say fine I guess, I haven't been told otherwise, she generally has an aide with her when she's navigating the playground, but misses out on some of the sport/exercise etc. He asks how she goes on excursions - they haven't had any yet. He suggests the school provide her with a wheelchair. He then says I should look at getting one for her too for longer walking trips {longer than 500ish metres}.

I gasp.

I wasn't ready for it.

I suggest perhaps an "old lady walking frame", he nods. I suggest elbow crutches, he nods.

It hit me like a tonne of bricks. I knew it would happen at some point but I didn't think it'd be now.

We go on to talk about the Medicare safety net, and how I need to register for it, and should be able to claim Isla's physio expenses. He agrees with me about the crappy way TSC is set out. AND it turns out that while we lived with Dad we could have and should have been accessing TSC campus about 15 minutes from home, not the place about 45 minutes away, but that's a whole other rant in itself. He agrees that it'll be hard to qualify for anything given Isla has no Intellectual Impairment.

What to do now?????

Two weeks til Botox. Wish us luck.

PS Here's Isla in her new 'Helpers' ready for school - complete with flashing shoes to help her get that all important heel-strike ;)


Anonymous said...

That's so crap that she can't get what she should be entitled to! Makes me fume! So I can imagine what your feeling! Hope you can sort something out now they are more aware of her not being able to access anything!

It's hard to hear and even know when to take the wheelchair path.

Great to hear about her kidneys being stable. Hope your Paed has some suggestions on how to manage her compacted bowel, sounds awful...poor little princess!

Glad Isla likes her new helpers. Violet had those rainbow ones but swapped back to her teenager with MP3 player...

Alison said...

So sorry you are still struggling with funding - how frustrating. Glad the kidneys are fine though - and hope you get the poo problem sorted.

Wow - the wheelchair comment must have floored you. I guess it makes sense for long distances though. I hadn't thought about all that walking on school excursions.

I hope botox goes well and that she has a good response. We haven't had the rainbow helpers yet - we have pale pink bunnies at the moment.

Belinda said...

Oh Ally!

Funding crap!

Her 'helpers' look great!

Why isn't everyone like Felicity?

Anonymous said...

Ally, so love the pics of Isla. She is gorgeous.

Bummer about funding crap. Nuts situation!

Great news that kidneys are great. Good luck with the bowel situation. I hope that sorting it out isn't too difficult. Doesn't sound like much fun!

Rainbow helpers are great :-).

Hate it when something gets sprung on you - like a wheelchair talk when you're not expecting it. Hugs xo

Samantha said...

Stupid stupid stupid funding *stomps foot*. Boy the world of CP is pissing me off today!

I am stoked to hear Dr L got to the bottom of the continence isue, but I am sorry to hear it is just another thing for Isla to deal with :(.

All I can say about the wheelchair is ((((hugs)))) xoxo

Big brother, Little sister. said...

Ally, the positive about a wheelchair for these sorts of situations might be more funding? I know that if she cannot self propel for a long distance she would need more help? I know with cooepr we are not to mention a walker or power chair until he starts school as the manual chair with attendent looks more favourable for funding.