Date : 13.10.06 - settling back in to normality
Hi Everyone. Thank you for continuing to read up on Sacha’s progress and for all your lovely messages of support. Absolutely everyone is asking me how she is and I’m sure all the positive energy directed her way is helping all those involved in her care to do their utmost best for her.
It’s been three weeks since my last post and Sacha has remained quite stable with few changes during this period. She continues to pull herself up into a standing position if you hold both her hands and loves being ‘walked’ around the garden - weather permitting! Yesterday i found her trying to pull herself up into a kneeling position by holding on to the sofa. Her legs are too weak to support her body weight so a kneeling position is as much as she can do at this stage.
On the downside, I am quite worried about Sacha’s eyesight. she had her last test in January this year and the Opthalomologist suggested then that she may have lost a little vision but he wasn’t sure as Sacha can’t indicate what she can and can’t see. At the moment, Sacha sometimes focusses directly on my face when I’m talking to her. This is usually best in the mornings before she has had her cocktail of anti-epileptic drugs (another reason to try and reduce them as much as we can). More often than not she will look at a point ‘beyond’ whoever is speaking to her or will not look at all. She does smile and laugh though when she can focus for more than a few seconds when looking directly at me - which is lovely. She is also prone to sudden bursts of laughter and I’m not yet sure what the trigger is as these giggles are quite spontaneous. I have made a recording onto my mobile phone and will do my best to attach this to the blog so you can see for yourselves (bear with me on this as I’m not the most technically minded person and it may take some time). Sacha’s classroom assistants and her helpers on the school bus have noticed the same changes that I have and once again it’s reassuring to know that others can see changes too. Based on what I have read of other patients’ experiences, I am expecting these changes to plateau out now but imagine we will continue to see little surprises over time.
Sacha had a medical check at her school on 28 Sept and it was discovered that she may have a slight curve and a twist on her spine. I was already conscious of this possibility as she hasn’t been able to sit up straight for some time now. She has been referred to a posture clinic so expect to see some results in the near future. I sat her in a children’s chair at a low table the other day and her back was a s straight as a rod so I will be doing this more often. I don’t know why this is. Both of Sacha’s Occupational Therapists are working hard to try and get us the best ’support’ furniture for her and today I went to the disability Living centre to look at a new bed. My back is suffering from having to constantly pick her up off the floor and hoist her into my arms so that I can carry her downstairs or to put her in her pushchair. I am looking at a bed that can be electronically raised from a very low position (so she doesn’t fall out and hurt herself) to waist height so that I can lift her more easily. The bed I saw was HUGE and had a surround made of glass and wood with hinged doors for ease of access. It is also used for children with behavioural difficulties so they cannot come to any harm (or escape). It made me quite depressed to look at it as it looks like a big cage but it has been designed with safety and health in mind. The OT reassured me that there are other versions!
This brings me to the fact that we now have to consider adaptations to our home to make it easy to look after Sacha now and later on when her health is expected to deteriorate. If she becomes bedridden we have to look at special mattresses that discourage pressure sores. When she becomes too heavy to carry we may have to have a lift installed to move her between floors in the house. The lift takes up quite a bit of space and our home will look quite strange. Less cosy and more like a hospital!! I don’t like the idea of this at all and have to get my head round it We are also looking at getting a stair lift installed which would suffice for now.
Today, Sacha had her 4th acupuncture session since our return. She has needles in her head, arms and legs. Last week, we tried putting a needle into her chin to try and help alleviate her drooling. She was fine with this last week but today she cried and cried when it went in and I hurt my back trying to hold her still and soothe her. She fell asleep in the end and the needle fell out so I’m not sure how we’ll continue. The last thing I want is for her to be in pain so I might leave this particular needle out if she doesn’t cope well in hte future. Our Chinese acupuncturist offered to make up some medicine which might help with the removal of the stored proteins and sugars in her brain (the symptom of Batten Disease which causes the body to malfunction). It costs £5.00 per day and I just can’t afford it. Her weekly sessions are costing £25.00 per time as it is! I would love to try chinese medicine as this was a subject that was discussed with our doctors overseas who really recommended it. I’m going to have to start fundraising again soon (no peace for the wicked…).
On 29th Sept, Neil and I discussed reducing the Topiramate even further down from 60mg twice a day to 50mg twice a day. We started this the very next morning but Sacha appeared quite ’shaky’ so we gave her the normal dose in the evening. Maybe it was too early for another reduction so we’re going to wait until we both feel that she’s really strong and has been stable for some time before trying again. The initial reduction has been fine, Sacha has had no side effects from it. She has also had no seizures since August 10th which is the longest period since her very first seizure back in 2003!!!
I found out this week that two Battens families (I hate that description) that I have helped with information will be taking their children to China in the next few weeks. Obviously, I wish them all my love and energy and pray for good results. Writing this post today has made it very clear just how much hard work is involved in Sacha’s care. Not just physical but emotional too. Sometimes it is just all too much and i want to make ’someone’ (!?) bring my normal girl back. I had a very black week emotionally last week and could only think of worst case scenarios no matter how positive i tried to be. You may not want to read this but the bottom line is that I am trying to save my daughter’s life from a very bleak prognosis. There’s no getting away from that. I won’t chase dragons but I will do every bit of research into conventional and alternative therapies that I can. It’s really tiring being on the internet every night when I just want to watch TV, read a book or go to the pub! Anyway, rant over…just needed to get that out.
Also, Sacha said ‘Daddy’ two weeks ago - for the first time in months. Neil, of course, was very very pleased
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!