This was me last Tuesday preparing for a meeting with the staff at Arlo’s nursery to tell them a little bit more about CF and the considerations/alterations they might need to make for him.
I have been mentally gearing myself up for Arlo to start nursery when I go back to work. I have been dubious about handing over control of the care that Arlo gets every day - albeit still totally worth it for the benefits that he will gain from nursery.
One of the toughest challenges with a CF baby is the need for those around you to understand that things that may seem minor to them - like a child playing in a wet, muddy puddle - are major to us. And are actually potentially dangerous for the well-being of our little #cfwarrior.
I was joined by Arlo’s CF nurse from his hospital team - I know this is the norm across the UK but I still think it’s amazing that she was able to join me (#lovethenhs).
I was strangely nervous but it went SO well - the nursery staff were incredibly understanding (and very risk averse which I LOVE!!) So I have genuinely come away feeling incredibly reassured and happy - and actually excited for Arlo to start this next chapter.
Here’s a few things I learned:
DO
Be prepared! I had prepared a kind of ‘list’ (or agenda) of the things that I wanted to discuss. I led the majority of the briefing - and Arlo’s nurse nodded along and interjected every now and then with additional information - which really bolstered my confidence in terms of how much I have learned and how we are managing his care!
Take printouts! I printed out a couple of documents that are provided on the @cftrustuk website to give them extra information and to remind them of the considerations that we had discussed in the meeting. I also sent a graphic to the nursery staff that outlines activities that Arlo can/can’t be doing - or what he can do with precautions such as through hand washing or fresh water.
Take the things you might need to show them - e.g. creon, how it goes on the spoon, the puree you will provide etc.
DON’T
Apologise. I did this a couple of times when we were in the meeting and then when I was sat in the car afterwards I thought to myself “Why on Earth am I apologising? For the fact that my son has a genetic condition?” It wasn’t as if I was asking them to make special allowances just for fun!
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