My challenges raising a PCD teen. By MumOfFive

image.jpegHello,

Teens are complicated creatures. I can’t seem to remember being so contrary! (I am sure my mother would disagree…)

A pre-teen daughter with PCD…a whole other ball game. Contrary + stubborn …

I realise that I am the adult in this relationship. I am the responsible one. I am the one who needs to guide the children, and this child in particular. So much rests on how I ‘train her up’ in regards to her condition – not the least being her future health and wellbeing.

The biggest challenge I have is getting her to do her physio. I have to nag. And nag. And nag. She ‘forgets’ sometimes. She procrastinates. She dithers. She makes faces. She sags her shoulders. She drags her feet. She basically just chews my brain about it.

And yes, I know it’s boring and I know it’s tedious. It’s monotonous and it seems never-ending, BUT it’s necessary and Oh-So-Important.

‘Make it fun! Involve the family! Make a game out of it!’ And while those are great suggestions, and do work wonderfully, they aren’t always possible, or practical.

U3 can do her daily chest acapella physio in less than 10 minutes if she just DOES it. That’s ten cycles of blows and huffs and coughs. Done and dusted in ten minutes tops. This is the hope, the dream the ‘artificial reality’. In truth, it takes a lot longer, what with the sighing and grumbling and the sitting-and-staring-into-space-with-acapella-in-mouth routine.

I have tried threats (no iPod!), I have tried entreaties (please? With a cherry on top…), coaxing (just takes five minutes…), I’ve even thought of trying bribes (£5! Yours!) [hey – don’t judge me, I’m trying my best here] – and in the end I’ve realised that ‘We just have to do it, no matter what.’ Like Rajinder Kang, our lovely physiotherapist says, ‘It’s like brushing your teeth. If you want to have teeth when you’re sixty, take care of them NOW. The same applies to your lungs, Madam!’

So, U3 needs me for the time-being. She needs me to remind her, guide her, prompt and prod her. And that’s ok. I will be here. I will always be here. It’s my duty to take care of her until she can take care of herself. And even after that! So I’ll nag, poke, prod, coax, plead and maybe even bribe. I’ll complain for a while, but the reality is that she is living with something that I do not, can not understand. I can only empathise. I will ‘Woman Up!’…

My second challenge is the recurrent chest infection she gets. We work as a team – parents, patient, consultant and physiotherapist to try and keep U3 as healthy as possible. Everyone has their part to play. We keep trying to blast the bug with targeted treatment, and it works for a while. Then…the infection returns. More physio is the answer, or at least it is part of the answer that will help immensely. Working on THAT one – yup…

My third challenge is Sugar. Sugar with a capital ‘S’. It shouldn’t be on this list. Hopefully, it won’t be for much longer. We are trying to cut down. Completely.

My fourth challenge is a bit funny. I don’t know if any other parents face this – getting U3 to swallow tablets. This is like pulling teeth! She can’t (or won’t) swallow tablets! Dissolving tablets in water, then drinking it defeats the purpose. They are meant to be swallowed whole. Our lovely nurse, Amy, suggested practicing with tictacs. I used largish jellybeans. U3 swallowed those whole – no problems. I thought, ‘Yaay! Sorted!’ Nope. Not sorted. Jellybeans are NOT tablets. Tablets CAN’T and WON’T be swallowed whole, or halved, or even quartered!

Oh well – there is a simple solution to THIS challenge, for now – syrup. Win-win.

Of course, it’s not all Sadness and Despair. We DO manage to get things done. What we need is routine, variety and consistency – and we are working on all of that.

We roll with the half-full rather than half-empty philosophy…

Next post -a few tips in regards to managing and living with PCD that  I’ve gathered from all the various professionals that work with us.

Until then, bye 🙂

Update on the pill-swallowing : At our last appointment, our consultant said to U3, ‘Don’t stress about it. You’ll find that one day you’ll just be able to do it! Don’t quote  me on this, (sorry Doc, but we had to quote you!) but covering the pill with butter seems to help. Don’t ask me why this works, but it does!’

We can attest to that fact! Pill-swallowing woes over! Yay!

 

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