There is a BIG bee in my bonnet!!!

Through Ellie, I have made some wonderful contacts and friends of other parents of kids with additional needs or disabilites. Its nice to hear what they do, what works for them with their kids, what therapys they do, problems they have gone through and what they did to fix it.... These parents are a huge resource of information.....

However, over time there also seems to be a common theme to the negative points that I hear... here are some of them:

- When applying for funding of any sort, you need to give the worst case scenario for your child, even exagerate if need be.

- Private therapy, toys, equipment is ridiculously expensive.

- Funding is not always given, even when the child has a obvious disability and learning dificulties.

I now have some questions...

1. When you have a disabled child. That is hard enough... why should you have to EXAGERATE on their condition. Why should you have to beg for funding??

2. Why oh why is private therapy, toys and equipement so expensive (with minimal government and health insurance funding) Does the government not realise that most parents of a disabled child counted on going back to work at some stage after their child was born... but now spend ALL their time caring for their child. Taking their child to appointments, taking their child to therapy, so that they can be the BEST that they can be. So for some work or making an income is not an option... why should you have to choose between suporting your child or contributing towards the income of your family, so your child can have what they need.

3. Why and this is a big WHY.... when a child who clearly has additional needs and delayed development gets knocked back for ANY funding for schooling or aids....

This 3rd WHY has come from reading a friends blog. (Violet's Journey) Sarah's daugher has Hydrocephalus, Microphthalmia (which is like Ellies eye condition, however it means small eye) These are only a couple of the conditions & problems that Violet has to deal with. Sarah has been going though a long process to get Violet funding to assist with Violets schooling & to get a aid etc. This involved putting Violet through 5 psych assessments.

The results of these assesments showed that Violets overall IQ was on the 3rd percentile, and the report stated that , "The combined results of the assessment are consistent with and suggestive of a mild intellectual disability." And Sarah was advised that based on these results Violet would not be eligible for any funding..

WHY WHY WHY and HOW Does this happen.. should not all children with disabilities be entitled to support and funding, regardless if they are classified as a mild or severe disability.

Why oh Why are parents of disabled children, constantly having to fight for their children??

These parents will fight and will NEVER give up, but It shouldnt have to be that way.

*phew* that feels better!!

(please take the time to check out Sarah's blog about her gorgeous daughter Violet at

Violets Journey)

Update on Ellies hearing

A few weeks ago I posted about another hearing test that Ellie had done, to check her hearingafter the grommits were inserted. The ABR still showed that Ellie had a mild -moderatehearing loss. For over 1 year now Ellie has been using a bone conductor hearing aid. This is inserted into a head band.

Yes... I see more of a response when she wears this, but.... its not the easiest thing to use. As it is in a head band on her head, if she rolls or moves, it can come move around the wrong way or come off....

Today we had an appointment with Australian Hearing and the paediatric audiologist asked what I thought of the bone conductor hearing aid, and how often Ellie wore it. To be honest, she wears it for about 1-2 hours a day. Which I dont think is enough, but as I said if she is rolling around on the floor it doesnt work properly.

The audiologist suggested that we get some small hearing aids fitted for Ellie. She suggested the Phonak Nios Micro III . These sit behind Ellies ears. They are quite small, and are fitted to Ellies ears, so they should stay in alot better than the bone conductor one. We also get to choose what colour we want. (of course we have chosen pale pink)

I am excited about this, as Ellie does respond more with the hearing aid on, and this is only going to help her in the long run if she can wear hearing aids for a larger part of the day.

So today they took a earmould impression, and we go back on the 21 June for Ellie to be fitted. They will also follow up with 2 hearing tests middle and end of July, & then probably look at seeing Ellie every 2-3 months to assess her hearing, the hearind aids, and ensure they are working in the correct manner.

Neurology Update

Today we caught up with Ellies neuorologist. He was very happy with how Ellie is going, as are Luke and I

She is alert, active and responsive & She has been TOTALLY seizure free since our last appointment (about 8 weeks ago) No absent seizures, no blank moments... NOTHING!!

Currently Ellie is on 2 medications to control her seizures. Ideally I would rather Ellie on less medicine than more. But with saying that, IF she had to be on multiple meds to obtain seizure control, then I would be happy with that.

So our plan is to SLOWLY try and reduce her Trileptil dose and increase her dose of Kepra, with the aim to end up just on kepra. I feel comfortable with this, because I know if there is any breakthrough seizuers we have back up meds to give..... & we can always go back to being on 2 meds... if that is what is required.

We have pushed our next neuro app out till 3 months away.... This is a good thing. This shows how well Ellie is travelling, considering at one stage we were going every 2 weeks...

Lets hope this good run continues!!

Just a few important words... plus some pics

Not much will be said in todays post... except that Ellie had her regular weigh in yesterday, and I could not believe it, she was over 7kg, she was 7.105kg to be exact. Considering Ellie was sick last week and vomiting... I was impressed!!!

Ellie exploring her electric toothbrush... she loves the vibration

This girls hair is out of control....

Our beautiful girl

PERFECTLY SAID...

"Let's not our needs determine our dreams.... But let our dreams determine our needs"

- Colleen F. Tomko

Never a dull moment....

Yesterday morning when I was changing Ellies nappy I noticed a very prominent red rash on her legs outside her nappy, they marks then appeared under her arm and on her wrists. I checked her temp, and she didnt have one, so wasnt massively concerned but thought I should get her checked out anyway. Within minutes after me making a doctors appointment Ellie started vomitting.... Right ..... Off to the doctors we went.

We have a fantastic GP, but after she checked Ellie, she advised she didnt know what the spots where from.... and as Ellie vomited again she wanted us to go to hospital for Ellie to be observed. This is not how I had planned my day... (Remember we have Lukes family down visiting at the moment)

So.... after Ellie being observed at hospital for a few hours and she hadnt vomited again, they advised that the rash was a alergic reaction to something and they would give her a anti nausea tablet and a antihistamine. They were about to send us home.... UNTIL.... Ellie decided to start vomiting again.... 3 TIMES. The doctor decided to do collect urine plus put a nasal gastic tube in to get some clear fluids into her. For those that have a girl and have tried to collect urine in those bags in a nappy.... you will agree that this is no easy task. After we realised that the urine went everywhere but the collection bag, we decided to do a catheter to collect the urine.

Test results came back that Ellies white cell count in her urine was extremelly high, in otherwides a unrinary tract infection. We were advised that this can also make them vomit. Ellie was then given clear fluids through her NG tube, which she managed to keep down. After a few hours we tried her on very small frequents sips of milk through her cup.... This she also managed to keep down.  As she managed to keep this down they decided to send us home with strong oral antibitoics, and by this stage Ellies rash had started to disapear.

However we have to go back tomorrow for them to review Ellie and see how she is going. They also want a kidney ultrasound done, this will be done on Monday

This morning she was happy, ate breakfast, had a small drink of milk and hasnt been sick... However the rash has reapeared, but looks slightly different. Will have to get them to check this tomorrow.

So after all that.... that was not how I had planned my day, But Miss Ellie does like to keep us on our toes, doesnt she...

Mothers Day FUN - A RUN FOR ELLIE

What a great Mothers Day we had!!! We were up at 5am, (Including Ellie) as we were off to take part in the "RUN FOR ELLIE" for which we were doing the 4km run for the Mothers Day Classic. Melbournes weather shined down on us, and it was a perfect clear morning.

14 of us ran 4km, one ran 8km, three walked the 4km, and we even had some walkers in Ballarat... Thanks Anna!!! It was a great way to spend my Mothers Day, surrounded by family and friends. 

After the run we held a BBQ brunch at a park nearby where Luke cooked up a storm and served bacon, sausages, eggs, onion, bread and muffins. Whilst I was running I was actually thinking that there was no way I would feel like a big cook up after running 4km, but believe me... it went down so well....

The day was a huge success, and has only motivated me more to get stuck into setting up a charity/foundation to assist kids with WHS.

I'd like to say some Thank You's:

1. Jeff and Tracey for the initial idea and running with it

3. Thank you to all who ran or walked; Jeff, Tracey, Pete, Shaz, Jess, Johno, Rachel, Scott, Daniel, Bridgette, Phil, Fee, Ivan, Chris, Jess & Kath (& little grace)

2. Scott and Silke from St Kilda Football Club for donating a 2010 team signed footy jumper

3. Kate Watson who kindly framed the jumper with no charge

4. Tip Top for their donation of bread for the BBQ

5. Tasman meats (Moorabin) for the good deal on the meat

6. Mel's parents with their donation towards the food

7. Lukes parents, and sister and 2 nephews for coming down from Newcastle for the run

Plus a BIG Thank You to the following people who all generously donated towards "A Run for Ellie"

- Meredith Stevens

- Veronica & Peter Otten

- The Hexts

- Kees & Judy

- Joel & Marian

- Hope Taylor

- Chris Hall

- Shenae Shutter

- The Pinxts

- Jaydo Constructions

- The Dehaans Cousins day

- Sophia Anderson

- Lynne & Ron Pedder

- Raunics

- Phil & Julie Caddaye

- Virginia & Bruce

- Opa & Oma Vanderneut

- Elizabeth Hedger

- Chris & Michelle Span

- Jeff Michael Rembach

- Big Sky Cu (T Hammond)

- PDH Accounting

- Ivan Pavic

- Michael & Lara Laverman

- Fountain Gate Edge girls

- Tracey's biscuit drive

- Great Great Auntie Alma

- Karen & Rob

- Rohan & Nicole, Skylah & Willow

- Simone & Justin, Meg & Lucas

- Roger & Anna

- Colin Young

- Robert & Lynn Dehaan

- Scott, Fiona & Aleisha Dehaan

- Connor Quinn

- Sonia Laverman

- Bridgette Reale

- Daniel Dehaan

- Dona & Joel Rambach

- Joel & Alicia Ellis

- Margaret Baynes

(If I have accidently missed your name please let me know... and I do appologise)

Here are some pics of the day... Enjoy!!

Luke, Ellie & Me before the run

The massive crowds

Some of us after the run, with our 'medals'

The 'Run for Ellie' Banner that Tracey made

Luke cooking up a storm

YUMMO!!! This went down so well after the run

Group photo at the BBQ

Last but definately not least... 

A BIG THANK YOU TO JEFF & TRACEY FOR ORGANISING THE RUN

Our beautiful Ellie

Ellie practicing sitting

Ellies big girl pyjamas

Just contemplating life

Cheeky 'grin'

Some time out

Watch out teddy

Getting stronger & stronger!

Ready to 'RUN FOR ELLIE'

There is only 6 more days to go till "A RUN FOR ELLIE" which is an initiative by 2 friends Jeff & Tracey.

Their idea was to run a fun run, gain sponorship & donations to go towards assisting with Ellies medical, specialist, therapy and future aids costs. We will be running the Mothers Day Classic on Sunday May 9, and it is a 4km run.

I have ran this twice before, but it was before Ellie was born... so I was a bit concerned if I could actually 'run' the whole 4km..... So on Sunday, Luke, Ellie and I went to the Botanical gardens, where the run will be held. Luke walked with Ellie and I had a practice run.... I actually did it.... the whole 4km and didnt stop (ok I did power walk half the hill) but ran the rest of it...

So now that the practice run is out of the way, I am ready to "RUN FOR ELLIE"


Watch this space for pictures of the 'run' and the day!!