all the information

by thankfeldenkrais

With Isaac now on six monthly Botox injections,
Suddenly he’s due again,
His third round to date,
But it never gets easier to decide if it’ll be worthwhile or not.

As his progress is undeniable,
We still face the strong-hold of his disability,
Which while ever-changing,
Has steadfast oppositions within his organisation,
Predominantly the fighting pull of his hamstrings,
Still fiercely dominant at the attachment over his sit bones,
While in an upright position,
Making raising the buttocks upwards into a straight-leg tall stance very difficult,
As the over-contracture insists on pulling his bottom downwards.

And so we conclude once more,
That to help dampen this battle with botulinum toxin injections,
Might again allow a window of opportunity for him to learn a new organisation,
Build quadriceps activation,
Which in the long term will facilitate greater change,
And development.

And thus far,
Despite some dosage errors,
And muscle selection uncertainty,
The results have leveled out overtime,
With some very good freedom having been opened up at times too.

But as my guilt-train continues to chug at full speed,
Seemingly as a constant state of being now,
I can never feel at ease with making such decisions,
Because there is always a big what-if,
And so much is trial and error,
The highest of professionals in the field,
Are of mixed opinion,
And cannot guarantee results either way.

Which usually leaves us with the option,
Of giving it yet another go.

And hopefully learning from last time,
What led to longer term gains,
During our active Botox period,
And what was lost once the effects wore off.

On the day,
We have another concern altogether,
As I am horrified once again by seeing my son drugged on Midazolam,
And this time most shockingly,
They have clearly overdosed his tiny system.

And so what should have only been a footnote,
To the injections themselves,
Now becomes an issue unto itself,
With the lasting side effects both worrying,
And quite possibly detrimental to Isaac’s already fragile nervous system.

Upon querying the necessity of the drug,
And my obvious concerns about its use,
I’m told it’s optional.

Are you serious?

I am furious at the lack of information openly provided,
Or any discussion surrounding optional use,
Especially given the current state of my son,
And I can’t help but wonder how many families like ours are simply subjected to the use or misuse of medications or treatments,
Even surgeries or procedures without the facts?
Deferring to the professionals,
Without realising we have options?
Choices?

And quite possibly leaving us with more problems than what we started with.

I am once again on high alert,
Will never subject my son to Midazolam,
Will be ruthless with my questioning and querying in regards to any recommended medical intervention,
And will play the devils advocate if it means having all the information,
To do what is right for Isaac.

Because honestly,
Isn’t life already hard enough,
Without throwing more curve balls our direction?

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But for now I just hope like mad,
The drug wears off,
Without leaving a permanent scar to Isaac’s memory,
Or behaviour.

So that we can then get back to the task at hand,
Which is intensive post Botox therapy.

 

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