baby · cysticfibrosis · mum · mummy · organisation · parent · weaning

Keeping Cystic Fibrosis Organised

Having a child who has CF means you have a lot more to remember and maintain on a regular basis. This begins with their medication, diet and also physiotherapy, it also includes the cleaning routine you choose to follow in your household and when travelling. Fletcher is 4 months old and our routine is very simple at the moment. Keeping organised is key to building a good routine with Cystic Fibrosis.

 

MEDICATION

We are very fortunate that Fletcher at present only has 2 different vitamin drops that he must take daily. He is pancreatic sufficient and therefore this means he doesn’t require enzymes to help him digest food. This helps us have less medication to remember to take!

Fletcher currently has Abidec, which is a multivitamin drop for babies and children. You can purchase this over the counter or even in Supermarkets, obviously Fletcher has it prescribed. He also requires Alpha Tocopheryl Acetate which is a Vitamin E drop. Both need to be used within a month. I write the opened date on the bottles, to remind myself when the date comes around the following month, to order his prescription again.

Every morning, before breakfast Fletcher has both of his drops, which we have maintained as a good routine since day 1. This means that not only will Mummy remember to give it to him but also Fletcher will accept it. He’s just woke up ready for the day and so he is awake and happy to take his medication without a fight – yet! However, I must stock up on bibs as the Abidec is bright yellow and stains BAD!

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DIET

Fletcher has only just started on his weaning journey. His diet will be very important to keeping him fit and healthy. I have a visit from the dietitian next week where I’m sure I’ll receive more information as to what Fletcher should be having.

Currently, he is having breakfast and lunch. We started with a few teaspoons of vegetables each day for a few weeks, as it’s always good to get them used to veggies from a young age so that they are more adventurous eaters. We added fruit after a while and then made him have 2 set meal times a day. Fruit for breakfast and savoury veggies for lunch. Fletcher LOVES his food so far, I think were going to have a happy, healthy eater on our hands!

To ensure I am giving him healthy fresh veggies everyday, I make my own purees and freeze them into ice cube trays. I have a steam blender which is great for creating them, as steaming keeps all the goodness within the purees. My top drawer of my freezer is full of a variety of tastes which I now mix and match to allow him to explore flavour combinations. Β I also create a plan for the week of what food he will have so I haven’t got to think about it.

See my weaning blog for more detail:Β Baby Weaning – Tips, Tricks and Our Routine

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PHYSIOTHERAPY

This has to be our challenge to make a routine of at the moment. Fletcher currently needs 15 minutes of percussion physiotherapy on his chest. This, for those of you who don’t know, is just where we pat him with cupped hands around his lungs to help move any mucus off of his chest. Luckily for us, this often helps to make him go to sleep. During this current 4 month sleep regression were going through with Fletcher, he’s being extra clingy and won’t fall asleep without being held/rocked to sleep. So, I often use his Physio as a method of getting him to go down for a nap. Meaning I do remember to do it for at least 5 minutes a time.

As Fletcher gets older, I’m sure we will struggle to get him to stay still for more than 5 minutes a time. But I hope to make it a routine somehow. Perhaps physio before lunch? If anyone has any tips that they’d like to share as to how they fit this into a routine, that would be good to know. Also, as he get’s older the percussion physio will be replaced by alternatives, such as jumping/bouncing, blowing bubbles, any breathing exercises basically. I imagine this just fits easily into your day to day life then, without even feeling like it’s physiotherapy at all.

CLEANING ROUTINE

This is something that you do to your own discretion to be honest. Some people are extreme with their cleaning routine, others not so. I personally would rather not go mad otherwise it almost becomes unnatural and difficult to maintain.

In our house, I will always ensure to clean the light switches and door handles regularly, as these are areas that get constantly touched by peoples hands. I used to wipe over it all with anti-bacterial wipes until I discovered Detol anti-bacerial spray, which needs no wiping. So once or twice a week I go around and spray it all, job done – nice and easy!

The bathroom is another area I feel is important to clean, due to stagnant water being a risk for CF. I always ensure that there isn’t any mould spores in the bath at all – it doesn’t take long for this to build up if you don’t maintain a clean bath/shower. I do have a fantastic CIF mould spray for any spots that appear. We have a daily shower spray which we use after every wash, which needs no wiping and helps to reduce build up soap scum. Then every once a week I give it a real good deep clean where I wipe down the bath tub and tiles with a bleach spray and generally clean the floors and toilet etc… as you do.

I generally keep a clean house day to day. Cleaning up after ourselves regularly anyway. We also have house rabbits which we clean regularly to ensure that they don’t harbour bacteria in their litter tray. Our rabbits also roam the living-room freely so I ensure to clean and vacuum the carpets often. I have a handy little hand held carpet cleaner to spot clean any dirty marks they may make on the floor – they are litter trained but sometimes their dirty feet can make marks which need cleaning. The carpet cleaner is also great for baby puke!

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Generally, nothing is too difficult for us to keep organised with. We are fortunate with Fletcher’s genes that his Cystic Fibrosis is very manageable in regards to medication at present. However, whatever you have to deal with in regards to your CF child you can always make it the norm. You can create a routine that works for you and your family.

 

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