Adjusting to a new normal

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Around 6 weeks ago one of E 's fortnightly cough swabs identified pseudomona aeruginosa, this  wasn't good news for Eloise. Long short story - E was given a 6 week course of an additional antibiotic (ciprofloxacin) and we started our nebuliser journey (nubulised Colomycin). 

I ain't gonna lie, E HATED the nebuliser at first. It was stressful and very time consuming. But we formulated a plan, persisted and E is now such a star.  We put Little Baby Bum on the TV (yes, this really is the name of a YouTube channel full of nursery rhymes!) and turn the volume up so she can hear it over the sound of the nebuliser.  It works a treat! Immediately afterwards she gets a few chocolate buttons (bribery & distraction!). We have to do this for at least 6 months. Fingers crossed it zaps the bug in her little lungs.


Thankfully treatment has come a long way - fingers crossed it continues to do so!



The oral antibiotics came with their own restrictions...no dairy 2 hours before or after and her skin became very sensitive to sunlight.  We are currently in the middle of a heatwave and all E wants to do is play & run outside in the sun. Factor 50 all the way! 


So, added to twice daily physio, numerous vitamins & antibiotics was a second antibiotic and twice daily nebuliser.  At first it felt overwhelming.  How would we fit all of E's care in, especially on the days we were both in work? But we did, we did it because we will do everything we can to help E and instil in her the importance of her medical care routine. And, it has become our ever day normal.  We have to be uber organised and we  still have fun, we laugh and we plan our adventures.

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