A day at home

A few more days have passed in Acorns. Niamh is still having some nice times: she is still loving the pool and spa sessions and our walks in the secret garden. We have enjoyed a couple of 'movie' evenings as a family, all cuddling up on the sofa - 2 hours of chitty chitty bang bang last night.

Niamh seems more sleepy each day. As we are having to give her Nozinan every evening now to help her sleep better (ie. to stop her arms from moving uncontrollably) , it is hard to know if her morning sleepiness is partly caused by the Nozinan or just the tumour. She tends to wake up properly after her lunchtime nap, around 3 or 4pm. Then she is awake for a good few hours.

Other symptoms we are now noticing more and more: her hands are getting more shaky and she is starting to lose balance when sitting (falls on the right, her weak side). She is also struggling to bear weight on her legs. Her right side is increasingly weak. It is heartbreaking to watch these symptoms again, after having already witnessed them last year before diagnosis.

We went home for the day today. We thought it would be nice for us all. Emilie enjoyed it. Niamh slept for most of our time there and did not seem too bothered to be home or in Acorns. Alex and I found it very difficult. We now know that we are best to stay in Acorns for the time being. Home is too real.

Emilie is very excited about starting school tomorrow and seeing all her friends. We have printed a few pictures of our meeting with Mr Tumble and our trip to Peppa Pig World to take to school. We want her to think of the good times we had during the summer.