Monday, August 27, 2012

Defeated...for now

At the moment, I am just surviving.
I should have known it was only a matter of time before I fell over again and needed some help to get back up.
They seem to come hand in hand don't they?
And I should have really just taken a moment when I felt the stress building up.
I should have just said 'hey, I need a day or two to myself'.
But I didn't.
And here I am.

I am ok by the way.
Just in between sick kids, a sick me, work, a zillion extra appointments to somehow squeeze into my already full all just became a bit much.
Cue: Me in tears sitting in my Managers office.
Thank goodness I have a supportive and wonderful workplace.
She saw I needed time out and told me to take it.

The worst bit of it all is the stupid anxiety that came back.
For those that suffer from anxiety (whether it be a sometimes thing like me, or an ongoing disorder), it truly sucks the life out of you.
My body just completely went into adrenaline overload.
For two days I felt like my body was full of electricity.
It is the worst.feeling.ever.
No matter how hard I tried to control it, I struggled.
It has started to pass again, and I have run over the anxiety a few times with a road train (or is that just how I feel?!)
If only it would stay away.

Le sigh.

Today we had our usual check up at the RCH.
It all went well.
Ryley's cholesterol came down which was great news!
He is now weighing in at a whopping 27.6kgs. Which is rather heavy.
He has only slightly grown taller.
So no changes to the diet for now.

Neither of the kids are that well at the moment, I think they are both fighting colds again.
Ryley still seems to have a virus of some description I think that it is connected to the conjunctivitis.

It just never ends sometimes.

Time to just do the bare minimum.
No extra appointments (although poor David has to have some extensive dental work which won't be nice).
And I am promising myself that I need to try and get back out running again.
But we just need to say No to things for a while.

As an aside, I am interested in how many Carers/Parents suffer from stress related anxiety.
I am thinking of researching this area and writing a paper.
If anyone has any thoughts or wants to share anything, feel free to email me at

Sunday, August 19, 2012

The dangers of indoor play centres

Who would have thought the real danger in these centres was your own kids?

Tuesday, August 14, 2012

Oh Seizures, can you please F off?

I haven't really felt like blogging lately.
Not that I don't have oodles of interesting stuff to say (all my lovely readers know that of course).
Life, as usual, gets in the way.

Yesterday Ryley had what we think was another complex partial seizure.
15 minutes long.
Repetitive gagging this time, with vomiting beforehand again.
We didn't call an ambulance.
We didn't administer the midaz.


Well, to be honest, we just didn't know what the right course of action was.

That's the thing about seizures.
Sometimes it is better to just do nothing and see what happens.
Although others may disagree (you know, doctors and other medical people...).
But we know Ryley better than anyone else.
And we are well and truly trained in how to manage epilepsy.

Ryley responded a couple of times via eye contact during the seizure, so we felt he was ok.
We figured all the ambos would do would be administer oxygen and possibly the midaz.
And we actually felt he didn't need either.
But by the 10 minute mark we did actually decide to call the ambulance, but then he started to respond a bit, so we decided not to.


He came to and he went to sleep all while having constant myoclonic seizures.
Thankfully we can administer meds and his ketogenic meal through the PEG.

This morning he woke up full of beans as though nothing had happened.

Seizures are something we deal with on a daily basis.
Ryley is always going to have them.
But sometimes, I really just wish they would fuck off.


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