Tuesday, June 21, 2011

Back to Square 1, maybe 2....

I'm livid at the moment.. ABSOLUTELY LIVID!!!!

It may not be much to others but we have been working towards getting Dommy's Metatarsus Adductus and Clubbing of his feet corrected in a way that would avoid long term multiple surgeries and pain - and we were winning the battle! We got his feet to a situation where they were straight, they were no longer rigidly stuck in a deformed position and he was able to wear shoes designed for regular children...

Now, after being promised that there were physio's here in Mt Gambier who knew how to continue the treatment and continue to correct his feet we discover there is NONE!!! No one!!! The one who said she could and would was reading information off the internet before his appointments to see what she was meant to be doing!!! She admitted this to us, that she knew nothing of the Ponseti method of treatment for clubbing and Metatarsus adductus!!!

The curving of the feet show
Domeniks Mettartarsus Adductus, January 2010

"they" (being the physio and podiatry department of the local hospital) decided that he was beyond their training and that his feet were reverting to rigid and tightening into a boomerang shape again and he needed to be referred to the Royal Womens and Childrens Hospital in Adelaide... This decision was made almost 8 months ago!!!

His toes should NOT be pointing this way
while he is standing,

...also there is a 'roll' on his ankles
from the mild clubbing - this became more
obvious as he grew. January 13, 2010

We have been told several times that referrals had been sent. I have followed up myself with the hospital in Adelaide several times after being assured they were sent and they reported they have not received them. Now let me get this straight so you can get a sense of my frustration. Referrals have APPARENTLY been sent regarding this by the physio department - twice, the paediatrician - twice and the podiatrist - once... That makes (if they are telling me truth) 5 referrals that were sent regarding Domeniks feet to this hospital - so why are they not getting there??? Why have we not heard anything?!?!?!!

I found out why today....

THEY DIDN'T SEND THEM!!!!! Not just that, but apparently they CAN'T send a referral for him!!! It's taken all this time for them to bloody well work that all out (yeps, just a little bit mad and incredulous here at the mo) Apparently the only persons who can refer Domenik through is a GP via a special online form or an ortho surgeon!!!

I'm disgusted with their misrepresentation of the situation and hoping against hope that these further delays in getting treatment wont result in the multiple surgeries that we have been trying to avoid! It was bad enough to begin with that we were constantly told he would grow out of it... The relief we had when he was responding to the treatment when we were warned that he may not as he was an "older" starter to Ponseti... And now this...

Domenik hated his casts as he couldn't walk in them,
but he would always smile throughout his treatments...
January 21, 2010

The ability to walk, run and jump without pain or distress is something that we all take for granted... It is something I wanted my baby boy to experience and be able to take advantage of... Now I'm not so sure about it... I know for myself that my foot has never been the same after I broke it and it required surgery. It has numb spots and can tell me when the cold winters rains are on their way and to be frank at times it downright aches! Something it never did before it required surgery... I really don't want any of my kids to have to feel that pain and we were getting there with Domenik! We were actually able to start to believe that he wouldn;t require surgery!!! Now, well the podiatrist here has already said that he will be too old to go back into AFO's and boot and bar from scratch and that we're looking at multiple surgeries as he grows to loosen tendons to stop his feet from curling at the very least, as well as a lifetime of special footwear and orthotics... I know it's not the be all and end all, if this happens it happens we can't stop it and will have to comply as there are no other choices now...

We had many nights of broken sleep,
cramping and frustration with his
boots and bar, but they did their job!
February 17, 2010

It just breaks my heart that my boy may now be subject to these operations we'd been trying to avoid and succeeding at all because of the stupid physio department here at the local hospital and how they have mis-represented themselves to us... IF they were honest and told us from the outset they could not deal with this the Burnie hospital would have referred Domenik to the Royal Womens and Childrens... now they can't and we're over 12 months behind with his treatment...

This was his beautiful straight foot after
coming out of the 5th casting Feb 11, 2010
We moved to Mt Gambier 2 months later,
"they" stopped ALL his treatment within months
of moving here...

His feet had reverted back to their 'boomerang'
shape within 3 months of moving here :(

Now try and tell me that I shouldn't be upset for my little boy....

Sunday, June 12, 2011

2011 - My Year...

This year was always intended to be a year of growth and finding myself, and in some weird way it really is turning out to be just that. We're halfway through the year (Already!?!?!) and I'm starting to see that the pains I've been going through are in their own ways 'growing pains'

I'm learning to stand on my own two feet more, and to hell with the consequences. By that I mean that I'm learning to be true to myself. Not to allow others to influence what I do, think and become. Too many times in the past 3 years I look back and realise that i was doing everything to please others and so little to enrich my own life and learning...

I'm learning to pick those who say that they are there for me no matter what, and those that really are. It's so easy for people to say that they support you and will be there for you, but when the pressure is on they crumble. Pressure meaning bad times, negative thoughts, not agreeing etc etc... Pressure doesn't have to mean full on red alarm bells, but even the simple act of not being available for someone else because I have had to priorotise my family instead.. that kind of thing. It's amazing for me to look back and see how when I was the 'yes' person I had people wanting me to do things etc for them, but the minute I had to step back and prioritise myself and my family they faded into the wind or found something about me they didn't like - They're loss ;)

Yes, I know these are HUGE lessons to learn. And as much as these lessons have brought me pain and meant that I've said goodbye to people who I thought were friends or at least good acquaintances, it means that I'm growing - and I guess out-growing these people who have different priorities and beliefs to me. Ultimately I don't care that they have different beliefs, priorities etc at all, we can all get along quite fine and I'm happy to work with that, but they obviously still need 'yes people' around them and I'm not willing to compromise myself like that anymore.. I think that means that I'm quite possibly starting to open my eyes to the world and in a sense grow up :) Finally hehehe

But even with all that learning, growing etc I know that there are still LOTS of things for me to learn and start to change in myself... One of these is being open and willing to accept help. I'm getting pretty good at standing on my own two feet (although I can get the wobbles from time to time) but I've never been good at accepting help... A little bit of that is to do with the fact I've been burnt so many times before by people who have meant to have been there for me meaning that I have lost the innocent ability to trust. I really really need to start working on that... I've always been the person that is there for others no matter what, It's time I started allowing others to be there for me.. of course it would help if I had others in my life who would want to be there LOL All in good time ;) Maybe before I find decent friends and start to build proper friendships where I wont get burnt I need to learn to be a friend to myself first... I've heard that many times before but never felt it applied to me... maybe it's time I stopped and MADE it apply to me for a change!!! Learning to be a friend to myself, trust what I am feeling and doing first, then branch that out to others around me...

I really do need to stop looking at the world as a place where I have to be doing something for other people, have to be there for them and start being there for me... I wonder if that is the biggest lesson I will have to learn this year.. if it is I hope it comes with lots of rewards, because to be quite honest I think it's about time these pains started reaping their benefits - there's only so much a gal can take

Friday, June 10, 2011

Got to Love "Options"

I'm going to say something here that not many people are brave enough to admit to... Something that I've been fighting for the last few days but I can't keep fighting it any more...

I'm Scared.

There, I'm scared - two words that have been bothering me the last few days in particular.

Why am I scared? Because I have doors closing behind me, options are removed and I feel I'm walking a very very lonely path as I see people scuttle to run away and watch what they percieve is a train wreck waiting to happen...

Well I can't allow a train wreck to happen at all. I have to make things work, and have no choice now but to trust myself and allow my body to do what it is made to do - that is bring my baby earthside safely.

It's not Aerynns birth that has be scared though - not at all! I've done it 4 times previously, drug free and reasonably intervention free (thinking Aleks being the one with most intervention due to inducing) Her birth doesn't phase me one bit... It's the "what if's"

The biggest "what is" is our transfer plan. The hospital will allow Aerynn to be born there, that's all ok... but I was told on Wednesday that once I am at the hospital for her birth that I will have no say in my treatment, options or what happens. I can refuse procedures all I want apparently but the Dr said shrugging that "you will have no say in it" It didn't really 'click' with what he was saying at the time... it only dawned on me yesterday...

Where is a persons rights in this kind of situation? I know logically that they can't lay a hand on me without permission, but I know they do and have done here and I'm terrorfied that if we do have to transfer for whatever reason that they will do this!!! I have nothing to back me up or support me in believing that they wont! I don't trust them, I can't trust them with that... The thought of a stranger touching me when I am most vulnerable is scaring me. The thought that I will have no voice, no say in what is happening makes me feel sick to my core...

So yes, I'm scared. On so many different levels... There is NO WAY that I could front up to this hospital and have my baby there, and the only other choice is a homebirth for which I have seen people run as fast away from me as they can as soon as it was something we were considering. I thought I had a great and strong network of friends and support, even though some lived interstate... But the minute I didn't agree with what they believed in they went running away... Great support network hey... Now it's just me, DH and a few others scattered around... I know my parents will be here late July to help out... But the fact that there seems to be no one that I can turn to IRL is hurting me at the moment... I guess I trusted too soon, too deep and too willingly again and am paying the price... I'm not afraid of a homebirth, it is right for us and this situation. It is natural, gentle and not full of voodoo as people seem to want to believe. It is not dangerous, it is the way babies have been brought into this world for generations upon generations before us... There is no way you would be reading this post if it wasn't for your ancestors being home birthed!!! I still struggle to believe that I've lost acquaintances (they weren't friends as I thought as a friend would support you no matter what) because of our choice to homebirth and do things out of the 'norm'. That people have no concept of what we have gone through to even get to this stage with Aerynnn or even our other children!!!

People take for granted that they have friends and family around that can do stuff for them on a daily basis, something as simple as to give them a break... I don't have that luxury, so if I happen to vent or whine too much online there's a reason for it - it's the only place where I can have any meaningful contact with other people... If you don't agree with what I have to do or things happening in my life, don't cut me off - I don't make decisions on the fly, if you stay around long enough you'd know that about me. I research and research and look for alternatives that suit our situation... it may not be what you would do but it is right for me and my family, please allow us that respect! For those who have already turned their backs on me, I guess that shows more about the person you are than anything about me... take off your shoes and try to walk a mile in mine, it's not as simple as you think!

Right now I think I need to try and digest what has happened this week a little more... I don't know where we will stand if we need to transfer Aerynns arrival... I really don't know... The interventions they are talking about can mean a lifetime of physical pain for me - something that isn't easy to consider, let alone the psychological scars that may be left as well... Just imagine how you would feel if you were told that you had no choice but to allow strangers to poke, stick touch you anywhere in your body - including those that have been previously abused... you imagining it is no where near what it would be like living it which is something I now have to consider....

Monday, June 6, 2011

the Good Life :)

Ahhh yeps, smell the fresh air, feel the chill in your fingers, feel the rain on your face, smell the cow dung over the fence.... Whaat?!?!!

Yeps, you heard me right, cow dung... Well over the fence at the kids school that is LOL The Upper Primary class have adopted 2 calves for 6 weeks while they do a "cows are careers" (or something similar to that!!!) course in their class. Aleks being School Captain has had a prominant role in caring for one of the calves (Crumble) and Kahli has had a turn with them as well :) Last weekend we had the pleasure of being the rostered Sunday Morning Feed family... So we rolled out of beds at 7am **yawn** and went off to the school to make sure the calves were being fed by their 8am **yawn, yawn** feedtime....

It was chilly, but the sun was out, there was no rain last weekend (but yesterday when Aleks and Nathan went out to do the evening feed there was - bahaha I got to stay home in front of the fire hehehhhee) and yes, there was a pong LOL Cows babies are like human babies and poop wherever and whenever the urge takes them... lovely ;)

Of course I couldn;t let a photo opportunity go to waste.. so I've documented the mornings feed so the kids can remember one day that they did feed calves, they have had a taste of the realities of living in the country ;)

Mixing the Artificial Feed

Filling the milk bottles - quite literally BTW ;) 2 litre ones each!!!

Ahhh feed time!!!!

Even William had a go!!!

Dom meet Brandy

Brandy "kiss" Dom hehehe
Dommy ran away saying "cows 'ick" after that...
we're not sure if it was meant to be 'lick' or really 'ick LOL

Even Nathan had a tough time evading Brandy's long and slobbery tongue!!!