Routines are very important and beneficial to children, particularly from an early age. It encourages them to sleep better, eat better and behave better- the same goes for Joseph’s medication and treatments- now we have a good routine system he is very compliant when it comes to his daily treatments and medications.
Here is a typical morning for me and Joe- an example of how Cystic Fibrosis treatments fit in day to day life.
After we have woken up and had a little play and a hug we get to work on the routine. Before food we must do his treatment so first up is his inhaler. He has a salbutamol inhaler before physiotherapy to help open up his airways when he has a cold (as he has at the moment) but if he is well he doesn’t need it unless he is a bit wheezy. He has three puffs with 10 seconds of breathing between each puff.
Then we get out the phys phys (fizz fizz) mat or the physio blanket to start his percussion chest physiotherapy. We usually have Peppa Pig on for entertainment or books and toys at hand for distraction purposes. The phys phys mat is just an indicator for Joe to know it is time for physiotherapy- when the mat comes out he knows what is coming up! This is all part of developing a routine and was suggested by our physiotherapist at hospital.
Then percussion physiotherapy begins. Joe currently has thirty reps on each quadrant of his chest in each position. A session usually takes around 10-15 minutes and he needs to have it sitting up, laying on either side, laying on his front and laying on his back. In the video below you can see Joe having some percussion. This physio helps to loosen up the sticky mucus in his chest and prevent infection. We then perform some blowing and huffing exercises so blowing his recorder, huffing to steam up a mirror or pretending to be the big bad wolf and blowing the house down for around 5 minutes! This also helps to exercise the lungs and shift mucus. (he will have the same session again in the evening before bed but minus the musical instruments!) Throughout the day he is encouraged to do exercise and physical activity which also is important physiotherapy.
Then we prepare the medicine! He has several forms of medication including tablets that need to be crushed and put on apple puree, liquid medication and creon micro also on apple puree so he can digest food due to his pancreatic insufficiency.
Joe usually has a hearty breakfast (typically weetabix with full fat milk and nutella or honey, toast with peanut butter or pancakes) and he needs to have his meds with food and creon so that they can be better absorbed into his system.
Joe usually has a “pudding” after breakfast- typically a large full fat yoghurt with more creon as he requires a high fat diet to keep up his weight gain again due to his pancreatic insufficiency. Then he takes his liquid medications- as you can see in the video below he is very good at taking his medication and this is partly due to it being routine and just a part of everyday life! It can take quite a while to do all his treatments and meds on top of the usual toddler care so we do get up quite early or some days we aren’t dressed by 10! But we do it day in day out no matter what.