Ellies new hearing aids

Ellie got her new hearing aids this week, and I have to admit... I am impressed... They are little, the are not intrusive, they dont stand out... and they are pale pink!!!

These hearing aids stay on alot better then the last one we had, which was a bone conductor. They are quite easy to put on (although Ellie doesnt like the process of getting them on) however once they are on, they dont bother her at all. I havent noticed a drastic difference, so time will tell. They are going to follow up with quite a few hearing tests with the hearing aids on, to make sure they are set up correctly and working properly, so this can take time.

Ellie is still a little bit unwell, Doc says slight bronchilitis, and possibly asthma, as Ellie tends to get bronchilitis alot in winter. As the weather is not being kind at the moment, and is absolutely freezing, Ellie and I are spending alot of time indoors this week, and only venturing out if we have too... I am hoping that this together with the meds, she will be better soon.

Here are some pic's of Ellies hearing aids.

SICK Again....

Ellie is sick again... nothing major... Just a really bad cough.cold, that when she coughs too much she vomits. I really cant wait for winter to be over, as Ellie seems to struggle this time of year... They doctor hasnt put her on antibiotics as she only finished a course 2 weeks ago, when she had the same thing. She is having a dose of steroid cough mixture, once a day for 3 days, and if she isnt better by tomorrow I have to bring her back and they may prescribe some antibiotics.

Another problem at the moment is that Ellie is doing 'strange' things, I know this sounds very broad, but it is. She does a clicking thing with her mouth, some funny 'o' shape with her mouth, and head and lip trembling. When she is doing these, it is quite repetitive. We dont know if it is seizure activity or seizure related. I spoke to Ellies neuro a few days ago, and he said before we put up her meds, he would rather do another EEG and see if we can catch Ellie doing these 'strange' things. This hopefully gives us a clearer picture of what is going on. My thoughts are that there is some sort of seizure activity going as when she has been doing the lip and head trembling, she has been quite vague... a sign of seizures with Ellie. Hopefully the EEG happens this week

Aside from this we are all good, and Ellie suprisingly still has her sense of happiness and humour, even though she is feeling a bit ordinary...

LOVE this girl to bits!!!

Ideas, Visions, our Dream....

I have mentioned before on my blog that I have a 'dream'. That is to start a charity/foundation that will provide some sort of financial support for WHS kiddies around Australia, for things such as standing frames, walkers, operations, etc & also raise money to go towards more research into Wolf Hirschhorn Syndrome.

This is a massive dream, I know, and many people have told me that to set up a charity that the ATO recognise as a charity is HARD. This I also know... But this is something I really want to do.

I have a vision that the foundation would have an annual gala golf day/dinner... The dinner would be at a beautifull golf course. We would have silent auctions, live auctions, a fantastic MC, and of course entertainment.. I also envisage that we would do smaller things throughout the year such as sausage sizzles at bunnings whilst handing out flyers about WHS to provide more awareness.... Attending markets, painting kiddies faces, again providing pamphlets to raise awareness... the list is endless and it goes on forever.....

Yesterday my cousins husband came over to sit down and nut out how to get this dream rolling, and ideas for the future... this got me excited!!! (THANKS JOHNO)

I now have some homework to do... such as -

- Think of a charity name.

- Register this name

- Find out what a 'trust deed' is and if we need one (I think we do)

- Possibly find a lawyer who specialises in trust deeds and setting up charitys

Hmmmmm.... I am still trying to get my head around all of this, but it will be a learning process...

Watch this space!!!

Just because....

Cheeky Girl

A quick catch up with Aunty Sandra from interstate

Ellies new winter hat

Love love love this photo

Chillin'

Trying very hard to pull herself up

Getting stronger

Great hair shot

Practicing our standing

Torn...

I am torn at the moment. Currently Ellie receives physio and OT through a

Early Internvention (EI) program. Both Ellies therapists are fantastic & they come every 3 weeks. This session usually lasts 45mins - 1 hour. Its quite a intense session, to see where Ellie is at, give me some new exercises to do with Ellie, and then practice these. This gives me the confidence to do the exercises at home, which I do, most days.

However... lately I have been thinking... Is this enough? Can I do more with Ellie? I have been thinking about doing private therapy sessions on the weeks where the EI therapists dont come to our house.

Last night I went to a information night about 'What is Early Intervention' 'Why is EI important' 'What therapies form EI'. Leaving this seminar I thought ' Yes' I am going to start doing private therapy with Ellie. Yes I know it comes at a financial cost, but I learnt that the critical time period of learning is 2-5yo, and that the highest rate of learning is from birth - 3yo.

It was also mentioned that best practice indicates that children need approximately 2o hours per week of early intervention.... This shocked me... this is 3 hours a day.

However, on the other side of the fence is the views that, even if I do private therapy with Ellie, this still only forms a small part of her therapy routine. That the most part and the important part is what is done at home.

Yes... I agree with both of these sides... but why do I feel a nagging feeling at the moment that I am not doing enough. That I could be doing more..

Maybe this is because Ellie is 2 in a few months, and I thought she would be doing more now.

Maybe its because that with special needs kids the devleopment takes alot longer, and that I find hard.

Right now I am in the frame of mind, "What do we have to loose"

Love to hear some other thoughts from Mums

Catch up with other WHS Parents

Today Ellie and I had a great day catching up with friends. Friends who are also parents to WHS kiddos. I caught up with Anna & David who have Ryley who has WHS and they also have Braeden.

Then their is Liv, who has Elliott. Its so nice to share stories about whats worked with our kids, what they go through, what they are acheiving, seizures, etc... Its also really nice to see what the kids can do. As Ryley and Elliott are quite a bit older than Ellie, its a real positive to see what she may acheive...

With other WHS parents their is a real understanding, that they know exactly what you are going through... and this is, well... Nice!!

Ellie keeling a close eye on Ryley

Just because....

Ellie using her standing frame

Practising sitting

Looking pretty

Check out that 'hair'

More sitting

Dietician happy with Ellies diet

"I am happy with how she is going" ... Never thought I would hear those words about Ellies eating habbits.

Yes... she still eats small amounts

Yes... she still eats pureed food

No... she never shows excitment for food

However... she is having 3 small meals a day, and 3 bottles. She is starting to tolerate and somewhat enjoy meal times. Our dietician thought this was huge progress. Plus Ellie is starting her dinners with small amounts of savoury dishes, such as potato bake, bolognaise, risotto, vegies, caseroles etc... This is huge improvement from not so long ago where all she would eat was custard.

So... her tips for me, was to try and introduce more meat into Ellies diet at dinner time. So until her meat intake increases, Ellie will stay on the formula as this is giving her everything she needs, plus iron.

Ellies weight is still hovering about 6.9kgs, as for most of the last week she has been vomiting on and off... she isnt sick. Just vomitting... This has now stopped, so finger crossed we can break the 7kg barrier again