Surviving Summer (E17)

So right now I'm sat in the hospital. It's a planned admission for the boy-thankfully the three girls are off adventuring with PGL this week so I don't have them to negotiate as well.
We need to get bloods to try and figure out if there's any physical reason for his food refusal. It took me 9 months of petitioning his current paediatrician (the non-specialist doctor at the local general hospital) to finally be referred to another paediatrician with an interest in gastro (tummy) stuff. At that very first appointment with the gastro guy, a plan was made to get bloods and stool samples, and then tummy MRIs and scopes further down the line if we were still clueless.
He's currently out for the count, since any investigations require sedation. We try to make the most of it and get everyone in to do their thing-so this morning he's had bloods, a dental check and brush (we can't get near him with a toothbrush normally), and orthotics castings- a plaster mould of his feet to make his splints.
Even under sedation, he fought like a trooper when they did the dental check. I had to restrain him, and he ended up bleeding everywhere from the toothbrushing/fighting combo. #vampirechild
Anyway, all done now. Just calming myself down and prepping his feed before he wakes up. Such is the life. What fucks me off most about this whole situation is the absolute write off of complex needs kids. A typical kid who suddenly stopped eating to the dangerous extent of 'failure to thrive' would be quickly investigated as to the reasons why. Replace that typical kid with a complicated B and the whole context shifts; everything is instantly chalked up to being 'part of the course'
HELL NO. My kid is as likely as any other, actually probably more so due to his dodgy genetics, to experience a physical gastro issue that might cause him to stop eating. Furthermore, he can't verbally communicate anything, so it is absolutely imperative we find out if there are any underlying issues (tumours, Crohns, whatever) contributing to his food refusal. My kid deserves the same treatment as every other kid.
FUCKING SORT IT OUT. We've been pump feeding for over a year, and only now, due to constant pressure and pushing, and finally the trump card (which I assure you I only pull when absolutely necessary) of 'disability discrimination', are we getting somewhere with working out the why.
I'm tired of this shit. So damn tired. The constant fighting just for an equal shot. The trauma of not being able to meet his basic needs without medical intervention. If anyone needs me, I'll be sobbing quietly into a pint in the corner later after keeping my shit together all day for my boy. Cos what else can I fucking do?

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