Nice to be home

Niamh was still not great this morning. She woke up happy but around 9.30am became very unsettled and cried for a bit. Quite sure it was a headache. I gave her some paracetamol and within 30 minutes she seemed better. She played a little, did a bit of crawling but tired quickly. Around 11.30am the community nurse came to change Niamh's dressing on her central line. When she arrived Niamh was all smiles, by the time she left she was in tears. She fell asleep soon after (too much stress changing the dressing).

By 1.30pm we got very concerned that her shunt was overdraining the CSF (fluid in her head) which was causing her headaches, tiredness and vomiting. I talked to one of the doctors on Ward 10. He seemed to say that signs of overdrainage are headaches that don't go away with painkillers, drowsiness and vomiting (a couple of day or more). We decided to wait till she woke up to decide whether a trip to A&E was necessary.

Amazingly she woke up at 2pm, very alert. She wanted to go and get Emilie from school and loved seeing all the kids at the school. By the time we got home, she played with Emilie and even danced and played with her new piano. She had a bit of a moment around 5pm when I thought she was going to be sick but it passed. She then continued being cheerful and smiley. By the time it was time for bed, she decided she wanted to practice her standing and crawling. She did pretty well considering she hasn't been on her feet for a week.

And the happiest moment of the day was when she said, admittedly very very quietly: 'maman'. I wasn't sure I heard it right, but she said it again and again. Even Alex agreed that he heard her say it. Emilie then made her say 'mimi' and she did too. Again ever so quietly. Could it be a start?