Firstly the bit of good news. We found out this evening that the CSF fluid taken from the left ventricle yesterday is clear, no cancer cells. Phew!!! Also we may be able to take Niamh home tomorrow.
Niamh was very settled through the night. She woke up a few times but went back to sleep really quickly once in a different position. She was on hourly obs for the first part of the night and then two hourly obs and all was good.
She woke up calmly around 6am, a bit early for my liking!!! Niamh has had a lovely day on the whole. She has played nicely, been interested in stories, has interacted well all day. She has been enjoying the attention from all the staff on Ward 10. She has spent so much time on Ward 10 over the last 6 months that she is known by all of them, even the students! She particularly likes Kelvin, one of the students who kindly took her cannula out of her hand this morning. She wasn't too bothered about the cannula in her hand yesterday but today she woke up, looked at her hand and was not impressed. She made it clear that it had to come out.
Niamh also enjoyed a photoshoot this afternoon. Jason, a photographer, whose son was also recently diagnosed with a brain tumour was doing pictures for a magazine for the hospital. Niamh was happy to model and looked really cute with her post surgery hat/bandage.
We did not do any physio today, didn't want to do anything too quickly. Still we had a go at standing up and she was able to put weight on her right leg. She will have a physio session tomorrow morning and hopefully things will be back to how they were last week.
Other positive results from the surgery: Niamh is not dribbling and has been moving her tongue a lot more. Niamh started dribbling after her second surgery on 3rd November. She also was no longer able to pull her tongue out. Today it all seems much better. She is making sounds, said 'no' very clearly and possibly even 'plane'.
So on the whole a good day with some good news. Now we need to wait for the MRI scan on Monday.
Emilie is now off school for the next 20 days (hmmm). She has been happily surprised this week to meet a boy from her school (class above her) on Ward 10. They have been playing nicely together.
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