China trip Date : 15.09.06 - sacha arrives back in the uk
Sacha arrives back home in the UK :: Previous
It’s 10 p.m. and I’m waiting on tenterhooks for Sacha to come back home. It’s been two weeks since I last saw her and I can’t wait to look at her with my own eyes again. My friend Fiona has to come to stay and offer moral support as Graham is away this weekend. A car pulls up outside - it’s them. Neil has barely got Sacha out of the car before I am taking her out of his arms and kissing her face over and over again. My baby is home.
Neil and Rebecca do the ‘handover’ explaining when Sacha last had her meds, food, nappy change etc. They explain that she didn’t sleep much on the plane and Im glad because hopefully she’ll sleep through the night and get back into UK time asap. As soon as they’re gone I start inspecting Sacha right from her head down to her toes. She’s still the same. She’s quite alert, awake and vocal (making ahh ahh noises) so Fiona and I play with her for a couple of hours until she finally falls asleep in my arms. I put her to sleep in my bed as I want to be as near to her as possible. Sacha wakes up in the middle of the night whimpering as if in pain. She just lies there making low moaning noises and I don’t know what’s wrong. I cuddle her really close to me and she falls asleep again. This goes on for the next three nights and I realise that Sacha has jet lag. She falls asleep at approx 8pm then at midnight she’s awake and moaning right through the night. This drives me almost crazy as I’ve only just got over jet lag myself!
So, I’m sure you’re all dying to know what changes have I noticed since Sacha has been home. There have definitely been some noticeable differences both positve and not so positive. On the plus side, she is eating much better than before she went away. She seems to have more control over her mouth muscles, is swallowing food better but is still dribbling alot. We upped her daily water intake in china from 4 x 260ml daily to 5x 300 ml daily so this could be a contributing fact. She is very alert and can hold my gaze for quite long periods and will follow me round the room turning her head if necessary. She was doing this before China but seems more alert now. She is lifting her hands to grasp objects that are offered to her whereas in China her ams and hands were very weak and she struggled to lift them. The thing I am overjoyed about though is that on Thursday 14th September, Sacha started walking again when supported under her arms!! If you read previous posts you will remember that I mentioned Sacha had lost the ability to walk. Her feet would just drag if I tried to walk her down the 10th floor corridor. I was so scared that she had lost this function for good as that is what happens to children with Batten Diseaase. One day they can perform a function and the next day it is lost forever! To say I am overjoyed is an understatement. Jon at Stem Cells China had been very supportive to me regarding this aspect of Sacha’s physical being. He sent me emails from previous patients explaining that loss of function was common but would soon return - and he was right. I have been walking Sacha around the living room for the past all evening and she is willingly putting one foot in front of the other and even turning direction to go into the kitchen. What a clever girl! We now have to maintain her walking practice to build up the strength in her legs and see where this takes us. I’ll keep you posted.
It has been a busy week Since Sacha’s return. I have done numerous media interviews and we have appeared on national telelvision and local newspapers a few times. I am desperately trying to raise awareness of this foul disease that robs us of our children at such as young age. Our government need to inject more money into research and development so that parents like me don’t have to take their children half way round the world for potentially life extending treatment. The Batten Disease Family Association charity need funds to support parents and children in the UK and around the world who live with this day to day and we need to raise more money to take Sacha back to China if necessary and to buy her the special needs equipment that will help her to live as independently as possible. I will be shouting from the rooftops as loudly as I can.
Sacha goes back to school on Monday and settles straight back in. During the course of the week, her teacher notes that Sacha is extremely vocal and is eating very well. It’s great for her to confirm this as I know it’s not just my imagination. I have to be so careful not to imagine improvement just because I badly want it to happen.
On Thursday I pay Chris Wetherstone a visit. He is the local business man who donated the funds to pay for Sacha’s treatment. He read about Sacha’s story last year in our local newspaper and her plight so touched his heart that he felt compelled to act. He’s told me that he wants to take a real back seat in all of this but I can’t help singing his praises - he presented the opportunity to potentially save our daughter’s life. I give him a copy of one of the Chinese newspapers where Sacha appeared on the front page and he tells me he will do whatever he can. God bless him!
Later that day I take Sacha to a clinic specialising in chinese acupuncture and medicine. She is assessed and many questions asked about her illness. Not many people have heard of Batten Disease and our consultant wants to make sure she knows what and how to treat. I am dedicated to keeping up the work that was done with Sacha in China and do not want all of those efforts to fall by the wayside. Acupunture helped Sacha to stop dribbling for the first time inover a year and she has much better contro over her mouth muscles. The acupuncturist explains that it improves Sacha’s blood circulation in her brain and arms and those are the areas that we focus on today. Five needles to the head and four in each arm. Sacha doesn’t feel a thing and just wants to sit up rather than lie on the table. She is extremely energetic during acupuncture and starts kicking her legs up and down on the table and making lots and lots of ‘ahh ahh’ sounds in protest. It’s great to see her using her legs and voice like this. I copy her noises and she copies mine.
Over the last couple of days, Sacha’s upper body strength starts to return also. At the beginning of the week she was very floppy and would fall over if unsupported. This morning she pulled herself up into a sitting position when she woke up and I found her sitting upright on her bed! She is still not moving around on the floor of her own volition but I have no doubt that is what we will be seeing next. whilst Sacha was away, a good friend of mine Mel painted a stunning mural on Sacha’s wall of the Teletubbies (the only thing on TV that Sacha will pay any attention to). She also padded the lower part of the wall with foam (so Sacha won’t bang her head) covered in bright colours. Sacha has been reaching out to touch the bright colours.
Lastly, and I probably won’t write again for a month, I have changed the dosage of Sacha’s Clonoazepam (one of the six anti -epileptic drugs that Sacha takes every day). Neil and I discussed this and we found that Sacha was more alert on 1mg x2 daily so we have reduced the dose from 1.5mg x2 daily. In time we may delete this altogether as it was introduced in July to stop seizure. Maybe we will reduce one of the others instead as this one is particularly effective and makes her less dopey. We have a long way to go regarding getting her Western drugs reduced as it takes approx 6 months to wean her off each one. in the past this has led to seizures but maybe now that she has had stem cell treatment the new cells will protect her. I have also started giving her Nigella Sativa Oil which is homeopathic and organic. It is the oil derived from the black cumin seed and many parents have been able to take their children off conventiional medicine (with no seizures) after giving this to their children. We’ll see.
In this past week, I have also made contact with a family in Florida whose daughter has Late Infantile Batten Disease. They took her to the Dominican Republic for stem cell treatment twice and she has said three words and is spitting out her own toothpaste! Watch this space…
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!