Selasa, 22 Februari 2011

Never a dull moment!

In true Queensland Health fashion, we have our next surgery date...
Next Tuesday.
Nothing like a last minute theatre booking to fill your weekend with a dash of chaos and a good healthy splash of manic panic!

They finally managed to get her a booking to have her Tonsils and Adenoids removed... We've only been waiting since October when she had her horriffic sleep study done! I thought it would have been done quicker given how bad the results of the sleep study were... but I guess they had other ideas.

Never a dull moment!

Jumat, 18 Februari 2011

When it rains, it pours! Literally!

Wow... what a whirlwind of a week!

I spent 2 days in hospital after Alyssa was born while they investigated her and did all kinds of blood work because her haemoglobin was too high and her billirubin was high and they were worried about some kind of blood incompatibility.

We finally got the all clear on that and got her home Sunday night at about 9pm.

Monday morning, much to the glee of her big sisters, she got dressed up and taken to two different schools for 'Show and Share'. Of course, they had to help choose her clothes and dress her, which explains how she came to go to school wearing a white frilly body suit, a pink pettiskirt, little pink mary jane socks and with a big pink band and rosette in her hair. They were delighted.

By Tuesday things had gone downhill. I was in a lot of pain and could barely walk let alone do anything else and I had a blisteringly high fever. Michael rang nurse on call who told him that I had to present straight to the emergency department, who promptly put my in a bed and gave me copious amounts of morphine to help cope with the pain while they called in the surgeons for suspected appendicitis.

24 hours in hospital and I got released... not because I was better, but because there was a MASSIVE, and I do mean MASSIVE cyclone headed directly for us.

We drove home through the first lot of winds... it was so eerie... there were so few cars out, all the shops were closed, and there was just this air of impending doom everywhere we went, which was quite a few places because we were chasing an open pharmacy to get my antibiotics and pain killers.

The cyclone hit Wednesday night. Within two hours there were almost no trees left in our street, we had no power and the sound of the windows shaking was creepy!

The devestation left behind by the cyclone was awful... but we were so lucky! In the grand scheme of things, we only spent 9 days without power and we only lost a few windows and the side gate and a section of fencing... and my computer. The house across the street was demolished by a falling gum tree... but our town wasn't that hard hit.

The cyclone turned at the last minute and crossed the coast north of us, devastating a massive region of coast.

And then it was Valentines Day and my Birthday, both of which passed with pretty much no celebration because of sick children and medical stuff.

It's been crazy... but the craziness has made me realise how lucky we really are. No matter what happens, I have a family that I love and who loves me. I have been blessed with four beautiful children and a husband who is amazingly supportive and helpful, most of the time.

With all of that... given everything that has happened in the past two weeks, with people losing their homes, their lives, and their loved ones, what right do I have to complain?


Jumat, 28 Januari 2011

Sugar & Spice

Born Friday 28th January at 5.25pm

2 weeks and 2 days early.

52cm (20.8 inches) long,

37cm (14.8 inch) Head Circumference, and;

Weighing a beautiful 4.21kg (9 pounds 4 ounces).

Perfectly healthy in every way!

A beautiful baby sister for Jessica, Isabella and Nicola.




Selasa, 18 Januari 2011

The Light at the end of the Tunnel

So today I had a complete and utter mental freak out. I was struck with the realisation that in a few weeks, give or take, we're going to have another baby... another little defenceless being that will be relying on us entirely for every aspect of her care...

And to be honest, that thought scared the bejeezus out of me... and I wasn't sure if I was going to be able to cope with the demands of two babies at once... especially one with additional needs, like Nicola.

I phoned Disability Services... after all, they're supposed to be able to help. Their website even says so!

"The Department of Communities (Disability and Community Care Services) helps people with a disability and their families to access the support and services they need as they move through the different stages of their life."

Sounds great... right?

Sounds simple?

Of course, being a government agency, it could never possibly be that easy!

It turns out that being up here, we are in a black hole of services and support. We have excellent medical care in most aspects, primarily paediatric, but everything else has lapsed by the wayside.

If we were still in Brisbane we would have all the support we could possibly need. We had agencies that we were registered with who would organise everything we needed... even down to a cleaner to help clean my home if we needed it.

Here, I can't even get 5 minutes of respite care so that I can go to the loo by myself during the day!

Ok, so technically that isn't entirely true. As the ever so helpful lady explained to me on the phone today... There is help available... if I am willing to play by their rules... and according to their rules, I have two choices.

I can sign a statement declaring that I am a danger to my children and they are at risk of harm in my care, at which point we will come under investigation by Children's Services...

OR...

I can surrender my child at one of the specified locations. I can surrender my parental rights for up to two weeks without legal prejudice.

It's really that simple huh?

And with a wonderfully straightforward legal system such as this one, that offers so much support to the families who need it most, people wonder why carers of disabled children find themselves at breaking point and do stupid things?

Seriously... the mind boggles!

Needless to say, I declined their very generous offer. One way or another, we will cope with whatever is to come... we have no help... we have no choice.


Kamis, 30 Desember 2010

Farewell 2010

A Moment of Reflection.

Well... 2010 is almost over... and looking back, it's hard to believe we have had such a HUGE year... and how much things have changed.

We are finally getting a handle on her health care... we have a wonderful paediatrician who is not only available to us when ever we want/need him, but he is willing to listen to us and work with us... her therapy teams seem to be pretty on the ball with things, and all in all, things are moving forward.

It's comforting, considering that at the start of the year the decision to move back home was made more on a basis that her health care certainly couldn't get any worse than what she had in Brisbane...

It's great seeing Nicola opening up to new people and allowing more people into her circle, even if they are only family. She is finally opening up to my Dad and willingly lets him hold her now... a far cry from the child who, a year ago, wouldn't even let anyone else look at her.

I can only hope now that next year is even half as kind to us as this year has been!

Farewell 2010... Welcome 2011!

Sabtu, 18 Desember 2010

A Scrooge Moment...

I am discovering that I seriously hate this time of year... it is nothing but a constant reminder that my daughter is not like everyone elses. Every day is a new slap in the face, and I hate it.

I hate it, I hate it, I hate it, I hate it!!!

I have spent 8 weeks trying to find something for Nicola for Christmas. I was lucky and scored some new clothes for her on sale, which she desperately needs... but looking for that really awesome Santa present... and nothing is suitable! I don't want to buy her 'yet another' baby toy because she isn't a baby! She's nearly two and a half years old dammit! I don't want to buy her another rattle, or another teething ring, or another stupid play mat! I want to be able to buy her something that has a bit of wow factor... instead, the best that I can come up with is a Big Red Car to go with her Wiggles toys that she loves...

And then, on top of that, is the constant need to keep reminding family members of what she can and can't use, again highlighting over nad over that my child is different to my nieces and nephews. My sister wants to buy her a jolly jumper and doesnt' seem to listen to me when I tell her that Nicola's hips are not stable enough to put her in a jolly jumper! That's why we had to stop using her bouncy round about thingy! The pressure on her hips was too much! Not to mention the fact that she doesn't have enough control over her body as a whole to use the damn thing, least of all on the trampoline where she expects her to use it!

And don't even get me started on the Christmas parties... I mean... to start with, there is the fact that I am constantly being asked questions about why she's so small and why she doesn't walk yet and why she doesn't talk yet and why she isn't like her siblings or her cousins... then, on top of that, there is the fact that everyone insists on scheduling their Christmas parties at night.

Nicola is in bed by 5.30pm! I have tried to explain that over and over but if I say I doubt we will be able to attend, I get made to feel like the worst family member in the world... so out of guilt I end up going, knowing full well that it means an absolutely horrific night for me because I'm stuck in the corner on my own trying to comfort a screaming child who is stuck in cyclic meltdown mode because she has been taken out of her comfort zone and out of her routine, not to mention that these parties are full of people she doesn't know which scares her, and they're generally noisy, which makes her head ache. Plus it is insanely hot and humid here and her poor little body just really cannot cope with the heat at all...

Then I have to put up with people talking about how she cries so much and she is not the bright and happy baby that her sisters were... Well, newsflash... WTF do you expect?!?!?!

When we finally do get her home, she's so out of whack that the few hours of misery we spend at the party means that she is completely beside herself for days afterward!

I am sick of it! I don't want to do Christmas any more!!!

I normally love Christmas, I really do! I love the whole season... but this year, I'm just over it. I am over the constant reminders of how different my life has become. I love my daughter, I wouldn't change her for the world... but this Christmas is just making me totally and utterly miserable.

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Christmas really does bring out the worst in people! It is certainly bringing out the worst in me!

Jumat, 26 November 2010

Home Sweet Home...

WE ARE GOING HOME!!!

Nicola's surgeon came in this morning... he told me he was not prepared to discuss her recovery, lest he jinx what is happening... but he has us booked on the 11am flight and we're going home!

Woohoo!

4 days post surgery and we're outta here!

Go baby girl!!!