Tuesday, 23 February 2010


Last Thursday Violet had appointment with her Ocularist to add more onto her scleral shell. We pick it up again this Thursday.

Last Friday Violet had hearing test at Children's Hospital to further investigate why her last test at Jim Patrick Audiology was showing mild hearing impairment. Seems that Violet has whats called Eustachian tube dysfunction which is causing her hearing to be impaired, it is pressure in the middle ear. So we have to go back to her ENT for review on 7th April to see what the next step is and if she may need grommets to help with this problem.

Yesterday we were back to the Children's Hospital for Violet to start her casting again. She has to go back on Friday to be re-casted for her next one. Her Physio agreed that Botox hasn't made any difference yet. Hoping she won't have 3-4 weeks of them this time around.

Today she had Botox follow-up and sad to say as yet no improvement in her foot. She definitely has been relieved with the pain to an extent but so frustrating the Botox continues to have nil effect. Her Dr in the Physical Disability Clinic wants to cancel her next Botox which was due for 10th May. She agrees with me that as Botox isn't doing anything there is no point subjecting her to Botox injections if they will not show any results. She feels crunch time has come and on that same day Violet will be reviewed in the Physical Disability Clinic again and we will be discussing when she will be having orthopaedic surgery, starting of course with a referral to an Orthopaedic surgeon.

Here is a recent photo of what her foot looks like these days, it's no wonder she fell over and split her lip yesterday:

Next Tuesday I have my meeting with Violet's Psychologist to give her some background information on her before her Psych assessment.

Following Monday Violet is having her Psych assessment at The Spastic Centre and the next day Dave and I meet with the Dept of Education to discuss Violet's starting school "issues" and dare I say talk funding!


Naomi said...

I'm definitely thinking of Violet and of course you.

I hope everything goes well with all your appointments and no new problems arise. Violet seems like such a trooper though. She dearly needs a break from all this doesn't she?! She is going to grow into such a strong woman.

Melissa and Luke Young said...

Good luck with the psych test and the discussion re: Funding. Hopefully its a good outcome. Just a quick question, with violets scoleral shell, is that like a glass eye? Just curious as that is what ellie has, so just wanted to know if it was the same or something different. Chat soon : )

Sarah said...

Melissa, it's made out of sclera which is a hard product but not glass as such. It has a clear finish over it though. If you have a look at the right hand side of Violet's blog there is a quicklink to before and after photos of her scleral shell and it shows them when they are out to see if they are the same as Ellie's.

Alison said...

Wow - sounds like you guys are busy!!

I hope the surgery talk isn't too scary - sounds like it might be your only option.

Good luck with the school applications - I will be watching with interest as Ashlea will start the following year.

n0thingbuteverything said...

Oh Sarah,
I am exhausted just reading about all the recent appointments you've had. And I'm sorry that not all the news has been good. I hope that the grommets will help Violet with her hearing and associated issues. Working out ear problems could definitely benefit in other areas too.

And wow. Her poor foot. I am sorry that the botox is not helping. BUT I am pleased it sounds like you have a good team who are working towards helping in whatever way will be best for Violet.

And as for the funding. FINGERS CROSSED!!! I really hope that they see the error of their ways. It's craziness to think she wouldn't be eligible.


Laura said...

My goodness, what a full plate you have. I hope that you get the answers that you're hoping for through all of this...that it all ends up helping Violet. I do not envy you but will be thinking of you!

Mazzmerise said...

thinking off you and Violet through this and hope it all goes well,

Belinda said...

Oh Sarah! Appointments galore!

Violet's foot looks so sore!

Hoping all gets sorted and maybe a bit of appointment free time! xx.

Hannon! said...

Goodness! You've been busy!

I hope the surgery has the outcome you all hope. It sounds like you all have exhausted everything to prevent it, but I pray that it corrects her little foot. How does she do during the castings? Audrey can't stand it when people touch her feet from everything that she's gone through so far.

I will be thinking about you guys re: psych test. I hope the funding discussion goes well too!

April said...

Oh that picture of her sweet little foot made me teary- Hope things slow down for you soon!

Rosalie said...

I hope things go smoothly for your appts. her poor foot. You guys have been through so much.

Thinking of you guys. Hugs.