Date : 13.11.06 - November 2006 update
I’ve left a bit of a gap between posts as Sacha’s condition and health has remained fairly stable over the past month. She’s still eating well and is quite strong in her lower body. She can swivel around in a sitting position on the floor to reach toys or objects. Her grasp is pretty weak and she finds it very difficult to pick things up or hold them when you put them in her hand - but she always keep trying!
Her acupuncture has continued with weekly sessions. This stimulates her nerves helping to keep her limbs supple. Due to some very kind and welcome donations to Sacha’s fund, I have been able to buy 2 months supply of the chinese medicine I mentioned in the last post - which I have started Sacha on this morning. The herbalist won’t tell me what the herbs are called (all very mysterious) but I don’t mind. I have a strong belief in the value of chinese medicine. I have to boil the herbs two to three times for the appropriate concentration and give them to Sacha morning and evening. This type of herb is apparently a brain stimulant so I will keep you informed of any changes. It’s going to be quite difficult to attribute any changes in Sacha to any one thing as we are also reducing her Topiramate from 60 ml twice a day to 50 ml twice a day. this started last Friday evening and so far Sacha is coping well with no seizures. YAY!
Over the last two weeks, Sacha has been involuntarily sticking her right arm to the side and looking at it intently for a few seconds. Her arm is rigid and bent at the elbow when she does this. It’s quite disconcerting and I think it is a symptom of Batten disease rather than a seizure type. I’ve been advised that this behaviour has been seen in children with Batten disease before so I’ll wait to see if it affects other parts of her body before getting too worried about it.
Immediately after we got back from china, Sacha was much more vocal than she is now. She still tries to say my name and can manage ‘aaah aahh’ type sounds a few times a day. She seems to be fairly vocal at school though according to her teacher - who religiously documents everything for us. It’s great to have this support as others are watching over her too. Sacha tried out a new walker at her school last week and I’m told that she raced around the school hall. I would’ve loved to see that. It must have made Sacha feel quite good to make some independent movements and of course, it’s great for her leg muscles.
Last week, Sacha’s dietician suggested that we add some calories to Sacha’s food. Neil and I make sure that she eats a really healthy diet with plenty of grilled fish, chicken, fruit and vegetables. We can now add things like chocolate pudding, mayonnaise, cream cheese and tomato ketchup which we never did before!! Sounds like my kind of diet - although best left for Sacha to enjoy. I hope she likes trying out the new flavours.
I am really pleased to tell you that Sacha seems to have regained some control over her eyesight. I don’t know why or how this has happened and I don’t really care because I am so glad that she can see me and smile again. Since yesterday she has been looking directly at me when I call her name - even though I have to sometimes call once or twice. She has also been following me when I move around. It makes me feel a bit of relief that this has happened because it shows me that she’s got her eyesight for a bit longer. One less thing to worry about - and I am a big worrier! It’s a great feeling when I wake Sacha up in the morning and she recognises my face and smiles.
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!