Anouk: Holidays Roll On

Anouk and Neave have continued to enjoy the holidays, Anouk wakes up every morning with "what we do-in today and going to bed every night with "what we do-in tomorrow." We have had play dates with friends and lots of swims in Cath and Mitch - next doors pool - they have left us in charge whilst they are on holiday and we have made the most of their generosity, swimming most days. Anouk is very confident in the water and it is an environment where she can keep up with and interact with her friends on their level. Both girls have been fascinated by the Olympics and have decided which events they will be competing in when they are older, Neave has decided that Anouk would be able to compete in the Para Olympics! Neave has also noticed that the medicine Anouk has been taking as part of the drug trial does not appear to be working. There are signs that the pressure is beginning to build up in Anouk's head, she is vomiting in the mornings and has the occasional headache, she is having some difficulty with swallowing and she is no longer walking except with lots of support from us. When she was looking sleepy the other night i asked if she was tired "no not tired, just dozy in the head Mummy" She is certainly not spending any more time resting or sleeping, it is taking a long time for her to get settled at night, she does not fall asleep until about 9.00pm and we lay with her until she drifts off, it is a tricky exercise prising myself out of bed without getting a "Mummy" "Will you hold my hand" or "Mummy will you lay with me again". Yesterday was a particularly challenging day, Anouk was quite sick and drowsy, but determined to do as we had planned and go to the "spectrum" a big swimming centre with pools and slides, it was clear from the start that it was going to be too noisy and busy for her and she did not settle into playing, i decided to take her to a spa pool and thought she would sit quietly on my lap and enjoy the relaxation - but no - she wanted to swim and then to climb the stairs and i decided to let her be independent with this - but she could not grab the rail and slipped - it took me about 5 mins to realise that she had blood down her chest and that her chin was cut and so we spent the next half hour in the first aid room before i asked her if she wanted to go home - but no - she wanted to go to the hospice as we had planned - so off we went for lunch, a train ride and a concert with 5 saxophonists. Anouk appears to be unfocussed on her environment at times, but consistently proves that she is completely switched on, we were driving back from the hospice yesterday and she was lolling to one side looking semi comatosed, she reached out for a tissue and managed to grab one, i asked if i could help her and she said "no just a bit of dribble Mummy' as she purposely wiped her mouth clean. Then yesterday evening we were discussing what she was going to do today, i was off to work and Richard planned to take them to the cinema, Anouk stated that she would be going to the cinema if woke up feeling like she did at that moment - and sure enough she woke up - was sick and then went off to the cinema, out to lunch, out shopping, home had three lots of friends visiting. Anouk is completely unconcerned about being unwell, she takes it in her stride as she always has, telling us what she is feeling and what we should do about it but not being concerned about it. Neave is also coping remarkably well at the moment.

We have decided that from now and for the forseable future we will be taking things a bit more slowly and hopefully will have visitors dropping in and playing with the girls. We will have more support from the medial and nursing staff with more regular visits.

We had a leaving party for Fred and Sue at the weekend, they have made some good friends here. Anouk chatted to any willing adult...