Date : 22.09.06 - Update, and sacha's birthday
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Sacha has remained quite stable over the course of this week. The strength in her legs is increasing all the time and you can tell that she just wants to stand up and walk as much as she can. we’ve walked her around the garden and from where we park our car in the street, right up to the front door and into the house. She is also standing a bit better on the soles of her feet as opposed to standing on the balls of her feet most of the time. Eating is pretty much the same although she has been off her food on a couple of days - for no apparent reason as there’s no outward sign of illness.
On the downside, Sacha has not been sleeping at all well this week. She has woken up crying at four or five in the morning on four occasions. As Sacha hardly ever cries, this has been quite worrying. I have tried putting her in our bed but she just cries or makes moaning noises incessantly. I have tried getting into her bed (she now just has a mattress on the floor as she used to fall out of her bed and hurt herself). Each time I have cuddled her close to me and made soothing noises - just like any mother does with a new baby. Sometimes she has fallen asleep but only for the shortest time. When it happened again this morning, I was exhausted. I was so frustrated at not being able to do anything to help her and felt like both screaming and crying. I haven’t had a decent night’s sleep all week and actually just wanted someone to come and take over looking after her so I could crawl back into bed. Luckily she fell asleep at 8.30 and I dragged my weary self back to bed after cancelling our doctor’s appointment and ringing Sacha’s chool to inform them that she wouldn’t be in. My mother thinks that Sacha became so unsettled with the journey to China and all it entailed that she might be waking in the night wondering where she is and if I am there or not. Remember that she was away from me for two whole weeks and prior to that, I had been in Australia for two weeks without her. One of the hardest aspects of Sacha’s illness for me is her inability to communicate how she is feeling. Any time she cries or shows signs of distress, I have to go down a mental check list of what it could be and once all those boxes are ticked I am pretty much left in the dark. All that’s left to offer is love and cuddles and kisses.
It was Sacha’s 6th birthday on Tuesday but we celebrated properly with a lovely birthday party at her school. Three other of the special children in her class had birthdays too so it was a joint celebration with games of pass the parcel and lots of chocolate and sponge cake! Sacha even had a slice of chocolate cake which was quite surprising because she always has her food pureed. She swallowed the pieces well and am sure she thought it was delicious.
Neil came to pick Sacha up this evening. She spends every weekend with him and Rebecca. They are going to Monkey World on Sunday for Sacha’s birthday. Neil had tried to organise whether Sacha could hold or touch one of the monkeys because he wasn’t sure whether she would still be able to see on her next birthday. This, of course, makes me feel sad as it’s a distinct possibility. I do try however not to look too far ahead into the future as it’s too depressing. Before we had stem cell treatment, there was no hope and now that’s what we have.
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So many people have offered time and energy to support Sacha we have made a 'big' thank you page. Do tell us if we have missed you off the list!