Home

We are home and even though it feels very strange this time round, it is nice to be home.

Niamh started on steroids on Wednesday evening and it made a massive difference. She woke up the next morning at 6am, poked her little face up to see if I was awake and gave me a look to say: 'right, what shall we do?'. It was amazing to see my beautiful little girl smile again. We had a lovely day on the Ward (we knew we were going home later on in the day so it helped). We were overwhelmed by the kindness of the staff from Ward 10 as always. They sang her happy birthday and gave her a lovely present, a nice princess trolley so she can make us all some tea and coffee. Her favourite physios, Becky and Claire came to see her, the Speech and Language therapist, Jo also came. Niamh and we all as a family have become very fond of all the Ward 10 nurses and everyone who has helped with her treatment. We started in Bed 7 in Ward 10 on Wednesday 20th October and we left yesterday after having spent 10 days in Bed 7 again!

We had a lovely evening as a family last night. It is scary how many medicines Niamh is now on: steroids, various painkillers, antisickness, antibiotics to treat the possible chest infection. We have also been given a huge suitcase of medicines. The aim is for us to remain at home without the need to visit the hospital. If we are concerned about anything, the community nurses will come and should have everything they need in the 'suitcase'.

Emilie asked many questions about Niamh's scan last night. She knows Niamh is a lot more poorly than she was two weeks ago and she was worried. She wanted to know what other therapy we could try. Telling her that there was nothing more we could do was heartbreaking. She now knows what lies ahead over the next few short weeks. As you can imagine, she was very very upset and cried a lot. She loves her sister so much, it seems so unfair to have to make her go through this at such a young age. Today she has been fantastic, she is concentrating on enjoying our time with Niamh and is thinking of special things we can do together as a family.

This morning was a little stressful. We remembered in the night that Niamh's shunts had not been checked after the MRI scan on Wednesday. Both Niamh's shunts are programmable, the settings of which can be altered in the MRI (anything magnetic in fact can change their settings). As she was asleep we decided to wait till the morning. By the morning we could clearly see that the shunts were over draining. I took her to A&E/Ward 10 and the settings on both shunts were totally wrong. It is likely that the overdraining over the last 48 hours has been causing Niamh some more headaches today. As if she didn't have enough to cope with. Hopefully it should resolve itself over the next 48 hours.


Both girls are really looking forward to Niamh's princess birthday party on Sunday. French uncle, aunties, cousins, grandparents are all coming over, many of their little friends will be there too. We are praying that Niamh will feel well enough on the day to fully enjoy it.