China trip Date : 06.09.06 - days 21-23
I wake up reluctantly around 9 anticipating Sacha’s acupuncture session, I totally forgot she doesn’t go on Sunday. I haven’t had a good night’s sleep since arriving so an hour of kip would have been golden, although once I’m up I am up!. This worked out well for Sacha’s recuperation process as she lay asleep until 11. Whilst she was sleeping I spoke to Dr Wang. I advised him of both myself and Annette’s decision to be safe and stick to the spinal injection. Dr Wang agreed this was the best way forward and he then thanked me for all of our good communication.
Sacha wakes up and has her breakfast, I then put her on her feet for a while and I can definitely feel more muscle tone in her legs and she doesn’t seem as arched as she was when we first came, however she still feels really floppy and is yet to maintain balance for herself.
We take a break from Teletubbies and borrow Ice Age..what a relief!. she focuses for a while until I place a bell toy by her hand, as she moved she made the bell ring and she picked it up to observe!.
As usual it was Sacha’s physio session, I join her this time as Rebecca takes a shopping trip with Luther to the market. As Sacha lay on the mat the physiotherapist noticed that Sacha was cold and advised me to make her warmer so I fetched her a cardigan, he explained that the temperature drops here suddenly at this time of year. They all notice Sacha has become more responsive and is focusing a lot better. Jon joins us as Sacha is strapped into a standing apparatus, as he films I describe to him the improvements in her sight, relaxation of her muscle tone and the lack of dribble which has been in constant flow for over a year.
After writing another Blog we returned to Sacha’s room for more Teletubbies. I cuddle up next to her as Rebecca sleeps, I cant explain how good it feels to have my arm around her neck, just sitting on the bed together whilst we watch the TV. This moment means the world to me as I so enjoyed times like these 3 or more years ago when she was well. This is actually been one of the moments I have missed the most, if we could do this for the rest of my life I would be the happiest man alive. She really loves the comfort of my affection and looks at me in recognition, it feels very special to have these forgotten moments come flooding back to me.
How long will these moments stay, who knows but i doubt if I would ever have this feeling again if we didn’t come here.
Sacha has regressed slowly over 3 and half years and for such a long time I have been unable to restrain her to sit near me as she is always fighting to get away!. Now its like old friends just sitting together loving each others presence, she seems so happy and content as she gazes over to me and exchange eye contact. She tries to speak, “ahh” she says as she laughs and reaches out to touch my face gently, so gently. I can sit here forever and write as she turns her head to her left side to look at me and giggles when I utter gibberish.
Dare I say it, tonight feels like I got Sacha back, like a dream come true after all the nightmares I have woken crying. this feeling is enough for me as I write a tear forms in my eye .
Day 22
Sacha woke up really early today arouynd 7 am. She was wide awake. So Neil played with her till it was time to get her ready for her acupuncture. I told Neil that he needn’t come down with me so that he could get some sleep or have a shower. He hasn’t been sleeping to well since we’ve been here. I wake up 2 - 3 in the morning and find Neil in the common room doing Sacha’s blog and answering e-mails. It is really tiring, we wake up around 8 - 8.30 and don’t go to bed sometimes past 2 a.m.
When i took her down onto the second floor for her acupuncture, I’ve noticed again that acupuncturist has added more needles or sometimes the needles are moved around a little bit. I asked him why, and he said that it will not work if you keep sticking needles in the same place. Sacha looks happy and relaxed today. The doctor keeps telling me ‘Sacha Hao!’ which means Sacha’s better. I try to entertain her by singing, talking and screaming (we have this game where I scream and she screams back), she finds this really funny.
After her acupuncture, I take her back up to her room for her breakfast. And Neil has made her some boiled eggs which goes down really well. I Think Sacha is eating a lot better, not only eating a lot but swallowing food a bit better. She’s also more alert and aware of people around her. She has started to move her arms to rub her nose ( I haven’t seen her done this in a while), she grabs my arm for attention and has started to hold her toys too. Sacha is also very relaxed now. You can sit with her and play with her. She listens to you and she’s been watching cartoons too.
We take her out, again to the nearby supermarket, she falls asleep on the way. We put her big golf hat on to protect her eyes from the sun, still people bend down or pull her hat up to take a look at her. People here liked children (maybe its something to do with the one child policy thing?), so when they see Sacha, they point at her, touch her hair or stroke her arm. They appear to be fascinated by her. We head back to the Hospital in time for Sacha’s physio.
She did seemed a little quiet today, she has been laughing and making noises, but not as much as usual. She wasn’t upset or anything but just quiet. Luther gave her Ice Age 2 on DVD which she has been watching (Yes!! something different than Teletubbies).
The lovely lady who cares for Luther next door, sometimes cooks Sacha some rice porridge, with vegetables and a little bit of meat. Sacha seems to like eating this, (it is yummy!) I tried to tell her that she doesn’t have to cook so much as we had enough food to feed a whole family which of course Neil and I didnt hasitate to eat. I offered her some money, but she refused, so I went out and bought some fruit for them (Chinese people love fruit!) .
As tomorrow will be her fourth Stem cell injection,which this time will be through her spine. We will have to try to keep her up, as the Doctor said that he will try to perform the stem cells treatment in the morning. I hope he does because the last injection through IV, seem to hurt Sacha. We take her to the common room to write so that Neil and I can check out e-mails and write out her blog. I put on a cartoon, and she seemed happy watching the cartoon. We manage to keep her up till 1.30 am which by then Neil and I were so exhausted, we collapsed and went straight to sleep. ZZzzz!
Day 23
8am. Rebecca and I were awoken by maintenance work in the hospital, the work men were dismantling all the traditional Chinese loo’s (the crouching type) to cater for the westerners on the 10th floor. For a good hour they were going for it hammer and tong, the hammering was so intense Sacha was sure to wake up after all that hard work keeping her up last night. I find Dr Wang who apologises profusely about the noise, I ask him when Sacha is due her next injection, he mentioned that he was pestering the lab for them stem cells and they should be arriving in half an hour. Half an hour passes and Dr Wang enters the room and notifies us of another half hour wait… Sacha now wakes up so we are soon ushered into another room to prepare for the injection.
I get Sacha to her feet as she has to be lying flat for four hours to alleviate some tension if she was to be bed ridden all day, as she has no acupuncture or physio. She needs to lie flat because she could get a headache or the spinal fluid could leak out if she moves or she is upright.
We are then ushered into another room to prepare for the injection.The nurse tries to insert a drip into a vein yet again, she is starting to look like a pin cushion!. This time they were attempting to get her to sleep but by now she has become accustom to the pain of the needles as her muscle tone is less tight as when she first came here. I can feel for my daughter as she cries again, I really don’t know why they don’t use magic cream to numb the hand here like they do in the UK, personally I would have thought it easier to keep one needle in her hand throughout her stay here, but they have their methods I guess.
Dr Wang then lays Sacha in a foetal position and withdraws around 10ml of spinal fluid which he was very pleased with, as previously he couldn’t withdraw enough when he tried on the very first injection as she apparently hadn’t been drinking enough. He explained that he was very apologetic at the time as he had to withdraw the fluid from two different places in her spine which would have doubled the pain. We were glad that Sacha had so much fluid as Dr Wang says this was a good balance and would lessen the chances of fever or headache.
As the cells are introduced into to her body she weans in pain, we try anything possible to console her and fortunately she falls asleep. We then wheel her back to her room to sleep in peace for a while until the nurse returns to feed in the Nerve Growth Factor and MVE fluid, which according to Annette is Monosialotetrahexosylganglioside….just as I suspected!!. (This is a naturally occurring compound in cell membranes of mammals and is especially abundant in the membranes of the central nervous system. GM-1 has been shown to re-establish functional recovery of central nervous system structures that have suffered damage of various origins) I’m glad she is asleep for this as she was in some pain last time.
Sacha was not so happy when she woke up, speaking to a Mexican guy here who had arrived last week was complaining of a headache and backache after the injection so I guess Sacha must be feeling a similar pain.
Sacha has been jerking quite a bit today , I was a little concerned as this could escalate into a larger seizure but she was ok, although she did cry for a while when it was time for bed but soon went to sleep with the sound of Rebecca’s soothing lullaby!.
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!