Date : 11.12.06 - December 2006 update
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Hi Everyone. I’m not sure where to start with this month’s blog as I’ve been feeling quite low over the past few weeks. I’ve mentioned Sacha’s failing eyesight in previous posts and I wish I had good things to say but she hasn’t been seeing at all over the past 2 1/2 weeks. No-one can tell me yet whether this is permanent but I think it is. I’ve tried everything to test whether Sacha can see me but she can’t. I feel like my little girl is fading and only another mother (or father) could tell you what it feels like to know that your child will never see you again. I feel so robbed and cheated of having the experience of watching my girl learn, grow and develop. Why her? But, I say to myself, why not her? What makes us so special that bad things shouldn’t happen to us?
I am exhausted mentally and emotionally with the strain of organising. Organising doctor’s appointments, going to the hospital, organising fundraisers, organising my family life! I want to get off this train that is taking over everything I do. I can’t even think straight. Believe me, there is a black cloud that follows me everywhere, that invades my every thought, that makes me want to cry every second of every day. That’s what it feels like to be in this situation. It’s awful. Luckily, I have amazing friends and family that keep me propped up and I love my job of looking after children. The children are so happy and funny that i can’t help but be cheered up by them. Thank god for them!
I’m in the middle of organising an auction type fundraiser and almost everyone I know (and that’s alot of people) have tried their very best to help us by donating prizes or taking part in other ways. Thank you, thank you , thank you my friends. it would be a much harder and bleaker journey without you . People we don’t even know have pulled all the stops out to help wherever they can and the kindness of these people makes me want to cry. They help me to carry on believing that something can be done to help my child to live and not be taken away from me by this hideous disease slowly eating away at her brain. One of my friends has just climbed Mount Kenya to help raise funds for Sacha! These are the lengths that our friends go to.
On this note, we have decided to go back to China for more Stem Cell treatment (sct). When we got back, Sacha was a different child than she was before. So full of life and energy. How can I deprive her of the chance of having that again? I am fully aware that this disease is degenerative and the likelihood is that it will continue to erode away but if I can stop it or at least slow it down so that medical science can help us in the future then that is what I have to do. I don’t see that I have any other choice. We are looking at a different procedure for Sacha when we get back to China. There are now two more sets of parents around the world, who have children with Battens, that have had sct. Both of these had stem cells injected into the brain of their children and this is initially what we had hoped for Sacha but we just weren’t confident that our Chinese doctors had the experience in this area - with this type of illness. I can’t talk too much right now about what our plans are - as we’re still formulating them to be truthful - and nothing is yet cast in stone. We are fighting hard to raise the funds necessary for our trip and as soon as we have them then we won’t waste another minute but will take Sacha straight away. I can’t say that I’m looking forward to the long flying experience again but I would walk to hell and back if it helped my girl.
Sacha has been doing something new over the past few days which is so encouraging. She has been trying to kneel, by herself, from a sitting position. Her leg muscles are not strong enough to keep her in this kneeling position for more than a second but she does keep trying. She has physiotherapy every day at school and has acupuncture every week so these must be helping. As well as the sct, of course. We went to see our consultant at the children’s hospital last week and it’s so noticeable how our meetings have changed over the past months. In the past, he used to ask how Sacha was and we’d rely so heavily on his advice and direction. Now, it’s us telling him what we want to do and when. We have taken charge of Sacha’s medical future as much as we can and I strongly advise this to other parents and carers. Three years ago, when this all started we were so frightened and uneducated that we just said yes to what our doctors suggested which was usually more medication or different medication. Whilst I have no doubt that these medications have served their purpose somewhat i.e. less seizures, there are always alternative or complimentary options which do help. I would urge anyone in a similar situation to ours to do their homework. Educate yourselves as much as you can. Listen to the people all over the world who give advice and make suggestions. Use the internet! It was Neil and myself that decided we were going to reduce Sacha’s meds. We didn’t ask permission and neither did we need it - although we’ve always kept all of our doctors informed. She is our child and we are at the stage where we know what direction we want to take her in. As such, we have found that our hospital appointments have been quite drastically reduced from 1-2 per month to one every quarter! I wonder if this is because our doctors don’t want to get so heavily involved because we (her parents) are making the medical decisions or simply because Sacha has become very stable with no seizures since the beginning of August. It might be because we chose to take her overseas for treatment that has not got the final go-ahead (on humans) in this country! Maybe I’m being paranoid and they’re just letting us get on with it because they don’t have any solutions themselves. If I left I to them, Sacha would be more heavily medicated than I would like. We have to remember that Batten Disease is a killer and no child has yet survived so we are journeying into the unknown with all of this. But, I cannot look back and say I didn’t try.
Sacha continues to take food orally very well but it’s still a long process. She seems to forget that she has food in her mouth sometimes and will sit there with her mouth open. I have to blow on her face, talk to her or stimulate her tongue with a spoon to get her to move on. I’m not that worried about her eating just yet although one of the symptoms of Battens is that she will lose her swallow reflex and will have to take food through her g-tube. We have asked for a peg button to be fitted which means the long tube hanging outside her body can be removed and a button attached close up to her skin. She is always grabbing and pulling on this tube which is secured at one end in her stomach but hangs loose (about 1 ft) outside her body. I am so scared that she’ll pull it out as I would have to insert an emergency tube straight away to keep the hole open. No thanks! The peg button will look more aesthetically pleasing too.
Sacha’s school have invested in a new type of walker for some of the children and I have heard reports that Sacha is doing brilliantly in it. Her physiotherapist said that Sacha was practically running around in it last week! I will be going into school on Thursday to see it for myself. It’s really great that Sacha still has lots of ability. She receives so much encouragement and support every step of the way. She still laughs at loud noises, she can recognise the voices of those closest to her or most involved in her care, she still tries to vocalise and she can move around (a bit) on the floor. She eases herself out of bed in the morning - which is now a mattress on the floor to stop her hurting herself - and sits on the floor waiting for me to come in and get her dressed. She can still walk around if she is supported and she still lets me give her cuddles but not for too long as she always wants to be on the move. She’s a fantastic and brave little pioneer! I have alot still to learn from her
It’s so therapeutic writing this blog. I started off feeling so depressed but have cheered up a bit now as I write about my daughter’s abilities. A good friend of mine suggested keeping a diary a couple of years ago and, at the time, i couldn’t think of anything more horrific. Documenting the slow death of my daughter? But, it’s not like that at all. Writing this blog gives me strength and courage. When I see it all written down, I realise how much work, effort and energy is coming in Sacha’s direction. It’s a good thing.
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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!