Friday, November 20, 2009

Fame...

So we had our 15 minutes of fame the other night on RPA Where Are They Now? - actually it was really only about 8 - 10 minutes - but that's OK.

We were really happy with how the piece was put together. It was a really positive story about Ashlea and there was some great footage of the girls - they all looked GORGEOUS (no bias of course). It would have been very easy to do a 'pity piece' that focused on all the difficulties Ashlea faces, but instead it focused on all her achievements in the last 3 years. We have had lots of positive feedback about it which is nice. We even got recognised by a few strangers - 5th graders mainly - at school orientation yesterday!

Life returned to normal today with a visit to the physio. We tried out standing frames and have decided to apply for funding to get one - we are getting a fairly basic one (much cheaper) that forces Ashlea to do more of the work herself rather than a fancy one that does a lot of the work for her. While discussing the standing frame I got rather excited about the idea of also getting an adjustable table for her to use at home. I then thought it would also be nice to get an adjustable chair as well. If we had a table that was the right height for her equipment then she could either stand or sit at the table with the other children. At the moment Emma and Audrey sit at their IKEA table all the time but Ashlea doesn't have an appropriate chair - she uses a little wooden chair that is too low for the table. I like the idea of them all being at the one table.

The standing frame is called the Dynamic Standing Frame - it is quite affordable (as far as equipment goes) at around $800ish.

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As you can see it is pretty basic - but the whole point is to make Ashlea do more work when standing up. Also it isn't huge - I am sick of huge pieces of equipment taking over my house. The good news is that the preschool may be prepared to buy one for themselves so Ashlea can use it while there - and so that I don't have to lug this to preschool - along with the walker and the wheelchair.

In the same catalogue I saw these adjustable tables.

We would probably get the tallest one as it would be a good height for her when standing, and we would get it with a cutout (semicircle) shape in one side to make it easier for her to stand.

We're still thinking about what sort of chair would work best. The chair we are getting for preschool (CAP Adjustable Chair) would be good although it may not be high enough. Hopefully with a bit of padding we could build it up so we wouldn't need to adjust the table height every time we changed from walker to stander.


If anyone has a better idea for a chair and table let me know. It needs to be able to be used with the stander as well - the table will become the children's main play table and Ashlea will be able to access it easily - I am really excited about this and hopefully we will be able to get funding through Variety club for all 3 pieces of equipment.

Wednesday, November 18, 2009

Special Exposure Wednesday - Trick Photography

I think I have mentioned previously that I have been learning how to use Photoshop. It is quite fun - but as you will see from this pic I am still quite the beginner. Even so - I've 'cured' Ashlea where no doctor has been able to!

I just need some ideas for what sort of a background to plonk her into. Any thoughts???

Don't forget to check out all the other great Special Exposure Wednesday photos here. And also - tonight's the night! Channel 9 - 8:30pm RPA Where Are They Now? (Australian viewers only).

Tuesday, November 17, 2009

Wheelie good news!

Can you tell from my terrible pun that we have good news on the wheelchair front?

The funding for the wheelchair (Quickie GTX) we applied for just a few months ago has been approved!

Of course there are no actual funds available at present but when they become available the wheelchair will be ordered (there's always something isn't there!?). I would imagine that the absolute latest would be towards the end of the financial year, but I am expecting and hoping for much sooner than that.

Actually there are 2 hiccups this time - seeing as 'they' - the PADP - also funded Ashlea's special pram (the Swifty Stroller), they figure that now that we are getting a wheelchair we no longer need the pram and should give it back. I understand that funds are tight and what not, but really, we still need the pram and I am going to fight to keep it awhile longer.

The pram and the wheelchair really serve different purposes. The wheelchair is for attending preschool and being seen as a child rather than a baby in a pram. We will use the wheelchair as much as possible, but there are times when a pram is more appropriate. The pram has more of a recline in the seat, so if I were going out for the entire day (because we all know that is such a good idea with a special needs child) I would take it rather than the wheelchair as Ashlea would most likely need to fall asleep at some point. Also the pram has a shade and rain cover which make life easier in hot or rainy weather. The pram is lighter and easier to get in and out of the car for short trips into preschool / school pickups. If Ashlea were sick and needed to go to the doctor or hospital she would be more comfortable reclining in her pram. And then there is my personal favourite reason - sometimes you just don't want to be that conspicuous, and you want to duck through the shops with a pram rather than a stare-attracting wheelchair.

I don't think it is being greedy to want to keep both - well I hope not anyway. If we find Ashlea doesn't need the pram after awhile I am more than happy to pass it on to the next person. It has been fantastic and we love it. Which is why I plan on keeping it awhile longer!

PS Don't forget - only 1 more sleep until RPA Where Are They Now? Channel 9, 8:30pm Wednesday 18th November.

Monday, November 16, 2009

American Candy

A new and hopefully quieter week has begun.

We had a great time with my sister on Saturday. The girls were very excited to see her, and VERY excited to see all the 'candy'. I must admit that I am now so terrified of flying that I nearly shed a tear when I saw the word "Arrived" beside Carolin's flight number on the arrivals board. My mother was worried about terrorist attacks and muggings while overseas, I was just worried about the international flights...something about flying over water that is very alarming (to me anyway)!

Note to self: must stop watching Air Crash Investigation.

We all got a couple of t-shirts each as presents - Audrey got a very cute one of a person being chased by a bear with the slogan "Canadian fast food". Wish they had an adult size version of that one. I got a nice Harvard t-shirt so I can pretend I've been there.

The first thing we did when Carolin got home was open up the all the bags of 'Candy'. And I have to say - and I'm sorry to offend my American friends - we didn't like most of it. Funny how people in different places like and dislike different things (vegemite is a perfect example).

We tried Candy Corn - Emma was very excited to try it after seeing it on Wow Wow Wubzy. None of us are particularly fussed with that - its a bit too sweet. We also sampled Hershey kisses - again not great. For my Australian readers they taste like easter egg chocolate - a bit sweet and not creamy like Cadbury chocolate. And for the last clanger - I even didn't like Reeses peanut butter cups which I have heard other people rave about. I actually had to spit that one out as it tasted salty as well (I am on a strict no salt diet due to my Menieres). Carolin didn't bring back any Reeses Pieces which I have also heard people rave about. Who is Reese? And what is so good about his piece???

Now I hope I haven't offended anyone too much. Please feel free to tell me if I just haven't tasted the RIGHT candy to make a judgement! For what it is worth I have heard that you guys do REALLY good ice cream in the US. And we did enjoy the lollies in the shape of eye balls and severed toes and noses - that was fun.

So, what is your favourite 'candy'. What should we have tasted? And as Australians what should we be recommending to our overseas guests?

Friday, November 13, 2009

Friday ramblings

It's been a busy week this week with lots of ups and downs. We've had to cancel our regular therapy busy-ness in order to just get through this weeks busy-ness.

It started with the funeral of my friend's husband on Monday. So so sad. It brought back that collective feeling of sadness that I used to have all the time when Ashlea was a baby - I didn't just feel sad for me and Ashlea but for all the children and families in situations they didn't expect to find themselves in. The funeral brought that feeling back - I was sad for H in her situation but also for all my friends going through difficult situations.

Tuesday was Ashlea's preschool meeting which I have already blogged about.

Wednesday was Remembrance Day which is always sad. We had a service at work around the flag pole - the Last Post always reduces me to tears. For anyone wondering why I get emotional about Remembrance and Anzac Days my Grandfather was an Anzac so I am quite passionate about the importance of remembering the sacrifice of previous (and current) generations. Wednesday night I got my first glimpse of the "Next week on RPA" trailer. I am much more anxious about being on TV this time than last time and was on edge throughout the whole show just waiting for the last minute when they showed what would be on next week. I hate to think how nervous I will be next Wednesday!

Thursday Emma had kindergarten orientation. Don't tell her but that made me feel teary too! The current kindies sang a song to the new kindies - something about look at you you're coming to school. It was very cute but I think all the parents teared up at the thought of their little ones being big enough to start school. I think Emma is still quite hesitant about the whole thing but starting to look forward to it too. She is very friendly and talkative which covers up the fact that she gets very anxious about things - especially new things. The children met their buddies' (year 5 kids who befriend them) yesterday and the buddies had made them a card to welcome them to school. Emma carried hers around all afternoon.

And now the best part of the week - tomorrow my sister gets back from overseas. I am SO excited - don't tell her but I've been a bit lost on the weekends without her (we often disappear to the shops for awhile on Saturday afternoons). The kids are pretty excited too - especially as they have heard about the bags of 'Halloween candy' that are coming their way. Tomorrow night I'm also catching up with my good friend S who is newly back from Ireland - very exciting! Tomorrow is going to be a great day.

Wednesday, November 11, 2009

Special Exposure Wednesday




I had a completely different photo in mind for today...until this happened.

Sleeping child (Audrey) complete with sauce covered face:



But where is she sleeping I hear you wondering...good question. Lets pull back a little and have a look:




She often threatens to nod off during dinner if she hasn't had a sleep during the day - but this is the first time she has turned the chair into a bed!

Don't forget to check out all the other Special Exposure Wednesday photos here.

We will remember them



Lest we forget