The day in the life of a 2 year old with CF. Well this is going to be thrilling. How long do you have? How boring is your Friday night in? Haha Jokes aside I guess it may be interesting for some to see how our days pan out taking CF into the equation. We aren't huge routine people and we like to get out so our days are quite varied. An average day for Oli goes something like this...
Wake up anywhere between 530-730. Depending on any number of reasons including too cold, too hot, thirsty, sister being noisy. When Oli wakes up I would have usually already been up with Rube for awhile so I'm all ready for our walk. We head out and meet my sister and get a coffee (most days!) When we get home and I chase Oli around the house telling him we need to do his pats so that he can have some toast. He is quite hungry by this point and we use toast as the reward for doing his pats which works pretty well. He can't eat before his physio and needs at least an hour or so between food and chest percussion because of choking, aspiration risk, or just feeling generally crappy after being belted with a tummy full of food!
Oli's physio is proudly brought to you by ABC kids! Haha Peppa pig is THE BEST for physio. Each position we have to do 5 minutes for, each episode of Peppa is 5 mins. Lately I have been doing one episode of Peppa then Ben and Holly to get us across the line. It's really tricky on days when Ian's at work and I'm doing physio. Ruby will play on the floor but she often gets cranky and hungry and I just try to juggle it all to keep everyone happy.
After pats we have toast and I try to remember creon before I sit down with my cuppa and have my boob out feeding Rube. Oli will play and I'll put Ruby down for her 2nd sleep for the day. Usually its about 830/9. I then try and remember Oli's meds while I cook us some eggs on toast or a green smoothie or something yummy.
After the breakfast blur we usually go outside and Oli plays around and runs about with his chooks. Our day is pretty much walk, physio, breakky, meds, play and run or go out, lunch, sleep, play and run, walk, dinner and meds, shower, bed. Bed, bed, bed, BACK TO BED Oliiiiiiiii!!!!
I don't really have much interesting to write in regards to CF. Like I have said many a time it just blends into our family and because Oli is so well it doesn't take number 1 priority. Our main goals in a day are to keep Oli as active as possible, lots of running, providing healthy and sometimes not so healthy food, ATTEMPT to give him his all his meds on time and get him to sleep somewhere in between the chaos. So I guess CF is a priority in a way...I make sure he is healthy and active and safe. I'm so grateful for Oli's good health and I just pray it stays this way for as long as possible. However in a way I suppose Ian and I are responsible for him being so healthy to a certain extent which is comforting and gives me a push to keep going every day. Some days I could just give up, but I don't because he depends on me. In sickness and in health! Every.single.day.