Back to our Acorns Routine

I gave three reasons for Niamh's extreme sleepiness on Tuesday and actually there may have been a fourth possible and very likely cause. Niamh had a short fit on Tuesday morning. It was nothing like the two fits she had last year post surgery, it was not as scary and she came back to normal on her own without the needs for medicines. The consultant we saw yesterday told us that how ever short or long a fit is, it makes people extremely tired afterwards. This could explain why she slept so much that day. It is possible that Niamh will experience further fits.

We had a lovely day on the whole yesterday. After she woke up from her afternoon sleep, she did a bit of playing and enjoyed a spa session. We have definitely got used to our daily spa/swimming. She was very alert for it. She struggled getting to sleep in the evening. Her arms were very jerky. We agreed with the nurses that Nozinan was needed. She had a lovely sleep and woke up around 8am, nice and alert. We had a lovely morning. She is now having her long lunchtime nap.

Emilie has become very fond of the befrienders who come and do some art with her, especially Julie. She was very happy when Julie came to spend some time with her this morning. The timing was perfect as we had a meeting planned with a children counsellor, Sarah. After an initial chat with us, Sarah spent about an hour making a lovely kite with Emilie. This first session with Emilie was more about establishing a relationship with her, rather than to talk about our situation. Sarah offers support for siblings in Emilie's situation.

Emilie is doing well so far. On the outside she looks like a very happy child. She knows what lies ahead but doesn't like to talk about it. She is so young, it is hard to know how much she really understands as, as adults, we don't really understand either. She is looking forward to going back to school on Monday. Hopefully the routine of the school will give her a bit of an escape.

When I took her to buy some school shoes this afternoon, the shoe shop assistant asked her what she had been doing over the summer. She looked at me for an answer. He asked her if she had been on holiday and she said 'yes'. Emilie has had a nice summer on the whole but I could see that she was really unsure what to say, to be fair, I wasn't sure what to say either. She did handle it very well.