A day in the life of a Toddler with CF

To me, diagnosis day and hospital admissions aside, this period has to be one of the most testing for me as the parent of a small child with CF, not only does he want to eat everything in sight except what I actually make for him (which I guess isn’t all bad) but I find he is now much more independent, headstrong and a lot more mobile, I am forever moving things higher out of reach, a change from my first child who must have just been incredibly lazy because he hardly moved.

I don’t doubt I am dealing with all the same problems any other parent would face, from the toddler tantrums, watching my once quiet and reserved baby boy become almost monster like, throwing himself around on the floor screaming in a rage, this coupled with the fact he has quite recently learned to say “No” mean I am hearing “No” pretty much all the time.

The typical food games toddlers like to play have started, refusing to eat anything I put in front of him, with a shake of his head he pushes every meal away.  Now in an ideal world I would not be quite so pushy, but having lost a large amount of weight recently,  I know how important it is to put some fat back on him.  I find myself going back to the old tricks of adding cream, butter and cheese to everything I possibly can in the hope he eats something, even just a little.  I even find myself buying him a cheeky McDonalds when his older brother isn’t around and desperately trying to fill him up on fast food snacks before going to clinic to be weighed just to be able to add a few grams on.

Despite refusing my culinary delights, I often find that while my back is turned he has raided the fridge and can often be found in the front room with the odd block of butter or a chocolate bar he has stolen.  I know to most this would be of concern, however, I find myself looking to see just how much butter or chocolate he has eaten, feeling slight nauseous at the thought of him chewing on butter like he would a choc ice and a little worried about working out how much Creon I should give him.

Luckily this time I caught him before he ate it!

Talking about Creon, anyone know how many Creon you need for a worm and some additional soil? No, me neither! This is why Chester is not left unsupervised in the garden……ever!

As we all know, physical activities are fantastic for people with CF but I am beginning to wonder if all the activities he takes part in, such as bouncing on his trampoline, running games and “play fighting” with his brother have given him extra strength, I swear he’s almost superhuman,  it never ceases to amaze me how physically strong this boy is.  Which is fantastic until it comes to him becoming the toddler that doesn’t want to go where you are going.

The majority of outings end the same way, me carrying a screaming toddler under one arm.  He has simply taken to lying down on the floor and refusing to move.  Let’s face it, any CF parent’s worst nightmare right there, all I can think about are the germs on the floor, never quite knowing who or what has trodden that path before.  But any parent of a toddler or older will know how difficult it is trying to pick up a child that has started lifting up their arms to make getting a grip on them impossible and with having mastered making himself extra heavy it just adds to the embarrassment of being a fully grown adult, physically incapable of lifting up the little person on the floor.

Just a few of our wonderful trips out!

Then with CF comes the pill taking, and refusal to do so.  I find everything becomes this game of “How many times in one day can I say No?” and to be honest, I have lost count by the end of breakfast most days.  Up until Christmas Chester couldn’t say a single word, Christmas day started with Mamma, which was music to my ears, but soon overshadowed by him saying No to everything.

Anyway I digress; Chester has around 30 tablets a day, vitamins, antibiotics, antacids and enzymes, all with their specific purpose, the majority he has to take with food.   But being this power crazy, stubborn little being, on occasions he doesn’t want to, so I find myself using the good old trick of parent bribery, and this see’s Chester looking smug in the knowledge that he will get that milkybar dessert after his dinner because it is already on the table!

My mother in law often says she thinks Chester has been on this earth before because he just seems to know, and I am starting to think she is on to something.  Needless to say, Chester takes his tablets and will have at least one high fat mouthful of food which is a win for me, even though the smug toddler thinks he has won!

So with toddlers comes potty training, what a delight!  After “Poogate” last week which saw Chester trying to change his own dirty nappy, by smearing poo all over the floor, his teddy bears, his bed and in around 15 nappies which he had used to try and clean it up, I can’t say I am looking forward to this stage.  We have still yet to get his movements to an acceptable level per day, and he currently goes to the toilet, a lot, and although he is showing signs of wanting to use the toilet.  This area of parenting is the one I am dreading the most, especially with a beige carpet, let’s just say it won’t be little nuggets of poop we are cleaning up!

To me, CF is just a part of who Chester is, I wouldn’t say I have come to terms with it, because I don’t think I ever will, and whilst CF throws other factors into things we do, and sometimes shapes how we deal with things, I am keen to remember CF or not, he is a toddler first and I have to try and step back and let him learn for himself.

An average 0430 hr wake up call from Chester who has “tidied up”

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