The New Normal

We are slowly setting into life back at home, our new normal.  Things feel incredibly different and the 15 days we were away for don't seem a fair reflection of the journey we have been on.

It's strange being out and about.  I am very self conscious, like everyone can tell that things have changed, that I am now different.  I feel like people are staring at Hugo, even though no one has any reason to and I know it's all just in my imagination.  Hugo of course is taking it all in his stride and is loving being out and about after his 15 day confinement.

Richard and I have been watching him like a hawk, regularly checking for signs of a temperature or illness.  It feels like a waiting game, inevitable that at some point something will happen and we are tense with not knowing what or when.

We had our first visit from the community nursing team today.  They will be coming out twice a week to take blood samples from Hugo.  At the moment the process of accessing the port is still very upsetting for Hugo.  I am assured it is uncomfortable for him rather than painful, so I am hopeful he will get more used to it, even though it seems so sad that he has to.

Today also marks the last day of Hugo's course of steroids.  Fortunately a Hugo on steroids wasn't quite as bad as I'd feared, I think perhaps my over active imagination had kicked in again!

His appetite definitely increased, but to a level nearing normal, rather than humongous.  That is, with the exception of breakfast.  Hugo has been breakfasting like a king!  Wolfing down up to 4 weetabix, with a slice of toast chaser on occasions.  He has been tired and with tiredness came grumpiness.  His moods changing from dark to light like a flip of a switch.  We learnt to get him down for a nap or to bed at the first sign of tiredness or deal with the consequences, which were not pleasant and definitely out of character for Hugo.  So, while not as bad as we'd feared, we are all definitely glad to see the back of the steroids.....for now.

We are all in a stage of adjustment.  Hugo has left nursery, Richard is working from home as often as possible, Henry is on school holidays and I am off work.  Even putting Hugo's condition to one side, life is very different to how it was just a few weeks ago.  I suspect every time we settle into some kind of routine, things will change again and we will be adjusting to another new normal.

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