Monday, 26 August 2013

What IS routine?

Posted by Juliette
So are we in a routine now? Well firstly I can't remember what we used to do with Joseph particularly well, secondly what is 'normal' for a 4 month old? And lastly, I just had to change a yucky nappy at 4am and Sammy was very chatty about it all. Sammy also had a little vomit over his sleeping bag so Daddy was not able to sleep through this little middle of the night escapade as I needed some help cleaning everything up. None of this is very routine.

Tonight Mark told me that it is a 'CF thing' to be quite nocturnal and a light sleeper. It seems like our little boy was indeed sleeping lightly when Mark shared this new delightful news with me and he decided to show me how right Daddy was. Boo!

I've now managed to get him back to sleep with a feed so hopefully that's our excitement over for the night. Boo again, by the time he's sleeping soundly enough for me to put him in his cot without waking him (cos he's a light sleeper) it will be 5.30am and almost time to get up (I guess Mark could be right).

Having said all of the above, we are in a reasonable routine. Sammy has stopped feeding 24 hours of the day as his weight has caught up a bit. He has reasonable times for feeds, we have a pattern for his physio and medication plus if you've been out with us recently you'll know I now am comfortable, even organised about carrying some creon (an enzyme) and apple purée with us so he can have a milk feed whenever he wants to. (Creon is taken before every meal to help Sammy absorb the fat from his milk, without it he wouldn't grow.)

The subject of what we take with us when we go out is what I wanted to blog about. Unfortunately life with Sammy is not very spontaneous. Whenever we leave the house, even if its just for school pick up I prepare a bag of sterile spoons, creon and apple puree so that if Sammy needs a feed I can give one.

Recently we were very lucky and had the pleasure of staying out of London with friends. Packing was a nightmare, it took hours and we had to be precise to make sure nothing was forgotten. When we were finally in the car ready to leave Mark and I said to each other 'Never again'. 

We have only stayed away from home with Sammy once before and on that occasion I forgot the steriliser. I was ever grateful to Mark's parents who have every bit of baby paraphernalia you should ever need, owing to their clan of 22 grandchildren! I borrowed a steriliser and all the things we had inside ours. Mark's parents live 10 minutes away from my parents where we were staying so we were lucky. When packing for this recent trip we had to make sure we had all Sammy's CF treatments. This equates to 4 bags of STUFF and includes medicines, specialised milk, physio equipment, a steriliser (never forgotten again!) syringes to give the medicine plus the equipment to make up Sammy's weekly bottle of antibiotics (given to us as dry powder which we reconstitute at home.) (Our role of parents has extended to include carer, nurse, physiotherapist, PA and now pharmacist - perhaps this is the subject for another blog post.) With our 4  bags of stuff and the other baby things like a cot... oh and some clothes for the rest of us, we headed out of the city. We got stuck in some traffic and behind the obligatory tractor later in the journey but once we arrived at our destination we had an amazing time.

Despite firmly believing we would never leave the house again after packing for this trip, we will of course do it again because being away is so much fun once you get to your destination. 

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