This weekend has been very special. Thanks to a very kind friend, Matt, Niamh and Emilie were able to meet Mr Tumble on Saturday morning down in Bagshot in Sussex. The charity that Matt contacted were very kind and they offered to put us up in a hotel nearby on Friday night. We set off just after school finished. The drive was long but the girls were very good. By the time we arrived at the hotel they were hyper. Niamh was shouting excitedly to Emilie 'WAIT' as her little legs couldn't walk as fast as Emilie's in the long corridor to our room. Full of giggles. They loved sharing a bed too. Despite being sick first thing in the morning on Saturday and needing a new NG tube, she was quickly back in form for Mr Tumble. We arrived at the hotel where the meeting was to take place just before 9am (the hotel was beautiful). There were about 6 or 7 families. Mr Tumble arrived, some of the kids went quiet, some shouted 'Mr Tumble'. He spent an hour with them, singing, doing impressions of some of his characters, teaching them some Makathon signs, and just being funny. At the end it was picture time and hug time too. We were quite impressed that both Niamh and Emilie felt so comfortable with him that they were happy to sit on his knees and have a hug. In fact they asked for it.
Today we took the girls to Peppa Pig World near Southampton. It seems to make sense to go as we were not too far. Once again the girls had a lovely time. Niamh was quite bunged up with a nasty cold but it did not stop her from going on all the rides. They both had a long sleep in the car on the way home. They were very happy to look at the pictures of their weekend away before bedtime. Emilie can't wait to go back to school to show her photos of Mr Tumble.
Niamh has been doing better this last week compared to the previous one. The previous one she was very tired, she was back on needing to hold two hands to walk, she kept waking up with one very swollen eye which was worrying us. This last week has been a lot better. She has had a lot more energy, her walking has been better and she is back on needing just one hand to walk. Her eye has also been behaving better. We have had a few isolated cases of sickness, which we try not to read too much into.
She is now on weekly blood test. Her platelets last Monday were 94!! Still low but a lot better. She will have another blood test tomorrow morning, really hoping her platelets are up in the 100s now....
Two weeks till the scan.....
A few pictures (more on facebook):
lovely happy little girls!!!!
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