Will sailed through his last spinal injection well although on his last afternoon in China he showed us that he was well and truly over it! We met such wonderful people in China and no doubt will continue to maintain friendships. We were so happy to be home but the first few days was a bit weird as both mum and I felt a little disconnected. We were so used to being around the exact same people and surrounds for 3 weeks that it was odd to all of a sudden not to be there. A few days fixed that and we settled back into routine at home but I really do miss so many people and I’m sure Will is missing the attention!
He has continued to show positive, constant improvements since coming home, particularly in relation to his balance. I can stand him upright and hold his hips with my finger tips and he quite confidently holds himself up, bends forward slightly then pulls himself back up and even bends his legs slightly and pushes back up on them. 4 weeks ago there was no way he could come close to doing this. He is weight bearing further on his arms now which he was not doing at all prior to stem cells. I think his new found balance is helping him not only physically but also cognitively as he has a new found motivation as his confidence in himself grows.
Yesterday I was walking him around the yard and he was reaching for the leaves in the trees and enjoying shaking the water off the leaves before grabbing at them. No big deal I thought, until I realised that he was doing this with his right arm and hand! Wow, he has never used his right arm for reaching or grabbing. The movements were a little shaky and slow however this is a great celebration!
His rolling has taken a step up to the next level as he is seriously getting around. Although, the funny thing is, is that he only rolls to one side so unless he kicks himself into another direction he goes in circles : )
He starts back at physio this week which will be good for him and I hope to implement what I have learnt in China into his regime here.
Thank you to everyone for all your thoughts and prayers. I know many of them have been felt and our littlest man would like to say a big thankyou!
It will be very exciting in the coming months to watch further ‘miracles’ unfold, no matter how small. I’ll continue to update his blog.
Nicole
xx
February 4th, 2008
Apologies for not updating in the last few days. I started off just being a bit lazy (sorry!!) and then all 3 of us picked up a tummy bug resulting in mum and I being really sick. Will vomited a couple of times but was not unwell and just kept on smiling. Mum ended up at the hotel feeling miserable – poor mummy! By the next morning she was barely recovering and looking forward to a sleep in when I put a stop to that by calling her at 7.30am. “Mum, I’m sooooooooo sick. Please come and look after me”! What would we do without our mums!
So, for the next 12 hours I felt like death warmed up, had 2 injections to stop the vomiting and was poked several times to receive an IV drip. My veins were not cooperating so I felt like a pin cushion. The doctors, nurses and translators were kind and very keen to help make us well again. Anyhow, after 36 hours or so we are all on the road to recovery and feel like we can cope with the world again.
OK, enough about me. Let’s move on to the boy that you came here to read about. Yesterday, Will’s accupuncture moved up to a notch to a more extreme level! James was palcing the needles in Will’s head as usual when all of a sudden he drove a needle into the skin underneath his chin – ouch! Anyway, this is meant to help with his speech and I’ve attached a picture. Will wasn’t at all concerned about this but it made my blood run cold. Atleast the ones in his head are hidden by hair! James has agreed to give me notes on the points where he has applied Will’s acupuncture. This was I can pass this on and continue his treatment when we get home.
Will’s 2nd spinal injection was yesterday and went well. Like the first time he was back up in the room after approx 30mins however this time was wide awake and was not keen on sleeping, therefore not at all happy about being on his back. He must have cried on and off for about an hour, which is unusual for Will and was just as hard for us as we couldn’t pick him up. As much as we wanted to, we wanted more for him to not get a headache so mum sang to him and stroked his face (while I lay in bed totally useless) until he eventually fell asleep sobbing. Bless our little man, he slept for 12 hours which also meant that we did to! We were all smiling this morning : )
Will’s improvement with balance continues. Part of me is thinking perhaps he was going to do this anyway which perhaps he was, however there is no question that his treatment here is expediting his progress. There is no other possible explanation for how quickly he has progressed in the last few days. This afternoon he sat playing with toys in front of him for about 5 minutes – without support!! How exciting is this!! During this time he often looked up and behind at Jerry who was sitting behind him and if he became unsteady would regain his balance. He was able to lean forward and then pull himself back up without effort. He was still a little slumped but is posture is fantastic compared to when we got here.
Before we left home he was occasionally able to sit for a minute or so unsupported BUT he would rarely reach for an object, I’m sure for fear of toppling over. His trunk would also get very weak and he would slump forward, unable to regain his posture more than a few degrees. If he looked around him he would almost certainly fall over.
Another noticable and significant change is the increased muscle tone in his jaw which is resulting in less drooling. This is great as I am used to going through about 15 bibs per day! When at rest, Will’s mouth typically sit’s open but we are noticing that his mouth is closing more often than not. He’s also making lots of interesting sounds with his tongue and lips so I’m sure this is all related.
Many more people have been arriving and are all so nice. These friendly new faces are from Scotland, Australia and South Africa. Many more laughs to be had and hopefully stories of hope to be shared.
Cinday and Taylor headed off 2 days ago but have been stuck in Hang Zhou as heavy fogg has grounded all flights. Must be very, very frustrating for them as when you are ready to go home you just want to go! Hopefully we won’t have the same problem next week as I know by then we will be ready to go home.
The forecast for tomorrow is snow so we’re very excited about that. Don’t get to see much of that in Sydney! After feeling the chill in the wind this afternoon we don’t think it’s far off at all.
I’m off to bed now with a very rumbly tummy – hmmmmmmm, not so good!
Chat soon
Nicole
xx
P.S: Sorry mum for any spelling errors, poor punctuation etc. No spell check here!
January 12th, 2008
January 8th, 2008
What a great relief to have Will’s first spinal injection over with – phew! I was feeling very nervous about it, mainly because I could not be by his side during the procedure. The doctors decided that as Will is so active that it would be safer for him to have a general anaesthetic. Basically, if a patient is either completely still by nature or can cooperate with the doctors then only a local anaesthtic is required. As Will can do neither he had to have a general. Apart from the physical safety benefits of being still it avoided him experiencing any anxiety or fear.
The theatre waiting room was similar to any hospital at home only that I had to carry Will through a crowd of chinese people waiting outside in the hall. They were mingling amongst themselves until little “Suri Cruise” came by and then I felt like I was being surrounded by the paparazzi again. It was a relief to have the doors closed behind us but a few managed to crane their necks through the window to get a last minute peek. Boy oh boy, Will is going to be in for a rude shock when we get home when he isn’t the centre of attention everywhere we go. Coles is going to look like a very boring place indeed. Although, if anything is going to get Will to say his first word it will be the frustration of being out in public with nobody looking at him. I predict his first word wil be “Me”!
Will still had his IV in from the last injection so he didn’t have to be jabbed again which was good. This was to be of great benefit as he had 5 bags of saline throughout the night due to his fasting. Anyway, I gave him a big kiss, whispered that I loved him and watched him being taken to theatre. I surprised myself and held it together but having help from Cindy for reassurance was a big help as Taylor had already had 3.
Before I knew it 40 minutes had passed and Will was back in the room awake but totally out of it. It was quite funny as every sound that Will makes, he made in the space of about 10 seconds – really loudly! I think the anaesthetic made him a bit loopy but once I got eye contact with him and a smile I could relax again. Infact, when Cindy took Taylor down Will was already in recovery, awake and playing with the tubing that lead up to his bag of stem cells. If only he knew!
We had the keep Will flat on his back for 6 hours which I thought was going to be a nightmare. Moving around after a spinal can lead to a serious headache and no 1 year old can be told to “just lay still for 6 hours”! Anyway, our Will proved us wrong as usual and slept like ‘a baby’ until 7pm. He still has a couple of hours to go so I have him a bottle and requested a mild sedative for him. This did the trick pretty quickly resulting in Will giving me a very drunk smile and nodding off to sleep until 4.30am. Another bottle (of milk that is!) satisfied him and he slet until 8am. The longest sleep in yet which Mum and I welcomed!
Today he has slept more than usual but is as bright as ever so I’m sure after another good nights sleep he will back to his usual self again. I’ve been indoors all day minding Will while mum has head off shopping so by tomorrow I will be itching to get out.
I’ve been speaking to Joel several time while I’ve been away. Almost everytime I call he needs to be plucked out of the swimming pool so it sounds like he is having a terrific time with Chels. I love talking to him and miss him terribly. I’m sure he likes to hear my voice but he really is more keen to get back in the pool or back to whatever 4 year olds do that is more fun than talking to mum! Believe it or not, that makes me very happy as he is obviously settled and relaxed. Glenn seems to be coping ok without me too ; ) but we all miss each other and it will so nice to all be back together again soon!
There is a new family here from Romania with their beautiful 2 year old son. I’m not sure why they have brought him here, as the language barrier can sometimes make it hard to understand, but he is the saddeest little boy I have ever seen and it breaks my heart everytime I look at him. He just crys and crys and even when he’s not crying he looks so lost and lonely. At times it almost seems unbearable for him to be held but at the same time he must so desperatly crave love and cuddles to make it all better. His little face is burnt into my mind and I hope with all my heart that this little boy can be filled with happiness someday.
Seeing his saddness makes me realise even more so that despite all of Will’s challenges we are so blessed to have a little soul who is filled with happiness and maintains a smile just about most of the time. I’m convinced that Will is the only person in his life that is not worried about ‘Will’! Although I can just imagine how much bigger his smile and contagious personality will grow when he eventually gets upright permanantly and can see the world from a new perspective.
As mentioned in my last post, mum and I were to head off to some loacl attractions. The day was great, the markets were awesome and we will re-visit them for sure. West Lake was a dissapointment only because there was heavy fog but I could see that it would be very beautiful on a clear day so when the fog lifts I’ll head back there.
The buddhist temple was amazing and one afternoon was nowhere near enough time to see it all but what we did see was amazing. The carvings in the sides of the mountains are so beautiful and I’ve attached some pics. I’ve also attached a pic of Will in the standing thingo which he loves!
A group off us are heading of to dinner tonight which will be great. Although if I’m up after 9pm I may turn into a pumpkin. I’ve been heading off to bed at about 8.30 every night – not much to do in a hospital!
Tonight I’m staying at the 5 star hotel. Oh dear, that will be hard to take! Can’t wait to watch some english speaking TV. The idea of spreading out and having the bed to myself will be quite a luxury considering mum and I are sharing a bed not much bigger than a kind single!
Love Nicole
xx
January 8th, 2008
Today has been a very positive day that’s for sure. Despite Will’s constant upset during his physio, our little man is exhibiting some seriously amazing physical movements already and we are wondering where it’s all coming from – accupuncture, a fantastic physio or the first stem cell treatment. Whatever, we say bring it on!
His physiotherapist, Daisy, is quite obviously awakening muscles and ligaments that have never seen the light of day. I think I need to steal her and take her home with me – no offense Joan, I still love you!!! Will’s level of alertness has picked up too and it’s constant which I’m sure is due to his accupuncture. He was very alert at home but some days better than others.
Also, Will gave me his first cuddle today. All you mums reading this would so understand how beautiful this was. This no doubt was going to happen eventually anyway but it couldn’t have come at a better time. While sitting on the bed (supported by a pile of pillows) Will lent forward onto me and wrapped his left arm around my neck and cuddled in. I pulled away to see what would happen and he did it again – yay!!! Mum saw it too so it wasn’t just my wishful thinking!
I was chatting to Carl from the US this afternoon and he is experiencing a major breakthrough. He completely lost his vision 3 years ago after waking from a coma. He had 0% vision and could not even see shadows. Up to now this has not altered and in fact he was told he would never regain his sight. We’ll, today he has started to see flashes and flickering of light. An insignificant change for some but a big celebration for Carl. There a couple of people who left here recently with partial sight, after arriving completely blind. I’m so excited for Carl and really look forward to hear of his progress over the coming months.
Tomorrow we have the day off so we are going to see the sights with another Australian family. On the list is West Lake, Lingyin Temple (one of the most famous and oldest Buddhist Temples in China), WuShan Square and a Silk Market. I’m sure I will get some great photos and goodies to bring home. Perhaps I can slip in some meditation too ; )
Love Nic
xx
January 5th, 2008
What a relief to have Will’s first injection over with. I was a little anxious about the this as I knew our little man would not be at all impressed at being jabbed with a needle again. The nurses managed to get a vein very eaily in Will’s foot and thankfully it was all over with quickly. Having my baby looking up at me crying was not easy!
All seemed fine for a moment until Will vomited which the doctor thought and I tend to agree, happened due to anxiety and just being overwhelmed and overstimulated. As per usual Will recovered quickly and enjopyed being cuddled and sang to for the next half hour while his IV bag full of stem cells drained. It really was quite straight forward.
After another physical examination again today Will’s doctors feel quite certain of his classification of cerebral palsy. They believe that he has a combination of dystonia and ataxia with ataxia being more dominant. Basically this means that whilst Will’s limbs have almost full range of movement his movement can be jerky and he has poor balance/coordination. I was aware of the dystonia before however the ataxia is a new classification for me but one that makes sense. Only 5-10% of people with cerebral palsy have dystonia and/or ataxia.
As far as Will’s rehabilitation goes, this is good news. It means that while Will is going to potentially have substantial difficulty getting upright and mobile he has a good chance of doing so – eventually! This also confirms what Will’s physiotherapist and neurologist at home believe so it’s great to also have this confirmed by doctors here.
It was Mum’s turn tonight to relax as she got the chance to join some others for dinner which was nice for her.
Tomorrow is business as usual – accupuncture, physio, sleep, cuddles, walking and sleep again. The nurses and doctors are impressed that Will has his very own iPod in his cot playing Mozart as he sleeps! Although at the moment he is making the strangest noises in his sleep so god only know what he is dreaming about.
Love
Nic
xx
January 4th, 2008
The past couple of days have been pretty fun. Yesterday mum and I ventured out to a local department store which felt like we were walking through David Jones. We didn’t stay long as we were on our way to lunch but managed to stumble across the shoe department and saw the largest collection of boots that we have both have ever seen! I’ll be going back there for sure! Yesterday Will had a pretty torrid physio session so I have given hime a break today and have just put him to bed.
Venturing out is still attracting the same attention by locals but we are getting used to it and just getting on with it. The babies and children here are delightful but carried around and dressed very differently to our kids. Being so cold most of them look like miniature michelin men as they wear incredibly thick and bulky clothing with no crutch in the pants, some with a flap covering. That looks very odd and although available, most parents don’t seem to indulge in disposable nappies. Apparently from a very young age children are encouraged to use a toilet (or find a bush!) so I guess their crutchless undies come in handy when in a hurry! We saw one baby yesterday who was dressed for the cold but whose bare bottom was exposed to the world! These babies are plump and healthy with ruddy complexions and the parents were very keen to show them off to us.
We also noticed that children were either carried in arms, in slings or bamboo containers on backs or walked. We did not see one pram so perhaps Will’s rather large mountain buggy was either a sign of Western decadence or lazy parents! I’d rather be lazy anyday if it meant that I didn’t have to carry all of Will’s 12kg loooong body everywhere.
The weather has been very cold and on our walk yesterday ornamental pools outside buildings had frozen over to a depth of about three centimetres. Yesterday we hung pyjama pants out the window (like everyone else) then noticed an hour later that the water dripping from the cord had frozen solid. It stayed that way for hours until the sun came around. Our room faces the west and as such is beautifully warm in the afternoon. The temps so far of -1 to 7 have explained why every motor cyle has built in gloves with fur at wrists attached to the handles!
Last night I went out for dinner to a 5 star hotel with Cindy (mum from the US), Johnny (our chinese translator) and Alf (another transator from the US). It was so beautiful and as the room rate is only $75 Australian per night mum and I have decided to book a room periodically to give one another a break from the hospital to put our feet up and experience some decadence. It will be nice to just have a bed to ourselves I’m sure! The quality of this hotel reminds me of the Park Hyatt which certainly would not be $75 per night!
Will is responding really nicely to his daily accupuncture. The most obvious change is that his normally ice cold feet are feeling warm as toast permanently. His poor little feet normally feel so cold, even while wearing wool socks and shoes. His toe nails are sometimes blue! It is such a small change but so exciting and I’ll be sure to continue accupuncture when I get home.
Well, tomorrow is Will’s first IV stem cell injection. How exciting but scary too! Fingers crossed that he (or I should say, me!) copes with the needle ok. It is very straight forward though so I’m sure he will be fine. Anyway, having a glass of wine now in anticipation and have just been invited to go out for dinner to Pizza Hut. Home doesn’t feel so far away now!
Love Nicole
xx
January 3rd, 2008
href=’http://blog.stemcellschina.com/will/files/2008/01/img_0459.JPG’ title=’Will & Jerry’>
href=’http://blog.stemcellschina.com/will/files/2008/01/img_0462.JPG’ title=’Accupuncture 1′>
Mum and I shared a bottle of wine last night to celebrate new year although we were in bed soon after ten. Having wine was not without its dramas as we, cleverly we thought, bought three bottles of wine all of which had corks and we, of course, had no cork screw! A staff member loaned us one and Johnny opened the first bottle then broke the cork screw in the second. Oh well, staring at two unopened bottles did help to pass the time!
Will is now sound asleep following a day packed full of physio, accupuncture and electrical wave therapy (muscle stimulation). I was a little nervous about the accupuncture as he was to receive it on his head but he coped brilliantly and just smiled through it, with the exception of the final needle which he only whinged at momentarily. The accupuncture is aimed to stimulate the areas of Will’s brain controlling speech and gross motor skills.
It’s going to be full on for him as he has this therapy 5 days per week but it will be so worth it and I will also learn so much. It was great to get some new ideas for physio too. Daisy, Will’s therapist, managed to get him to use his right arm really well today, using a technique I had not seen before so that was fantastic and something that I can take home with me. He also received lots of cuddles from staff, all of which he has happily accepted. His ability to adapt to dozens of strange faces has been amazing and is really good for him in developing his flexibility with social interaction.
Its been so nice to continue to chat to everyone and start to feel a little familiar. So far I have met families from the USA, Saudi Arabia, Romania, Switzerland, Italy and Pakistan. As much as I am looking forward to Will receiving his first stem celll injection, it’s good that it isn’t until Friday as I’m sure by then I will feel very confident of my surroundings and the wonderful staff caring for Will.
I’m getting to know a mum (or mom!) from the USA quite well and tomorrow we’ll head out to the local resort for dinner. Her daughter has already received the spinal stem cell injections so its been of great comfort talking to her about it. I have been stuck in the hospital all day today so I’ll be really looking forward to getting out for a while tomorrow.
Until then,
Love Nicole
xx
January 1st, 2008
Hi everyone,
Welcome to Will’s blog! This is the first of many updates which I hope will not just keep you informed about Will but also enlighten you about stem cell treatment and other stories I hear of hope and optimism from people who refuse to give up.
On the day of our flight I was feeling really anxious. Had been feeling fine and quite neutral leading up to it but I suppose it had to hit me eventually. Not so much because of the journey ahead for Will but because of the terrible mother guilt I was feeling know that I was leaving Joel behind. I knew that he would be fine and that in fact I would be the only one feeling awful, but it had to happen.
Anyway, after venting and having a big cry on the way to the airport (Joel slept through it all!) I felt much better. Saying goodbye was hard but I know he is with everyone who loves him. The hardest part, leaving home is over now and here we are in Hangzhou (pronounced Hang-Joe)! Wow, what an eye opening 36 hours. In fact, it feels like we’ve been here for about a week and already mum and I keep looking at each other asking “What day is it?”.
The flight was great in terms of friendly service etc but it was a harsh reminder just how comfortable (NOT!) international flights are. What made us laugh though is how everyone has no problem eating plane food at totally random hours of the night! The worst part was that our flight was ahead of schedule which is normally a fantastic advantage. However, when this meant that the breakfast lights are turned on in the middle of the night to prepare for a 4.30am landing in Hong Kong – not so great! Anyhow, Will had his first taste of scrambled eggs and hash browns at 3.30am!
We arrived a few hours later at Hangzhou airport and were greeted with a beaming smile and warm welcome by Johnny, a translator and guide for patients at the hospital. He has been so incredibly helpful as have all of the staff we have met so far.
We are staying on the 20th floor which is dedicated to stem cell research and treatment. There are about 12 families staying here at the moment and we have so far met almost half of them. It is really eye opening to meet so many people from all around the world with very different backgrounds. However, we all share the same vison and truly understand one another’s motivation for being here – to improve the quality of life of our loved one’s. Already I know what a privilege it will be to share our stories and our hope.
Will had his blood test today and although traumatic for all of us he recovered quickly and managed to smile again soon after. He’s set to receive physio and accupuncture daily until Friday when he will have his first stem cell treatment. This will be via an IV. He will have 2-3 of these and 2 spinal injections. Evidently the IV injections will benefit the outer part of Will’s brain and the spinal injections will penetrate the inner brain. This was something that I didn’t know prior to meeting with his doctor today but found it very interesting and much more specific for Will’s needs. He also said that stem cell treatment offers improvement for patients in about 80% of cases, particularly for brain injuries such as Will’s. He was quite confident that in Will’s case there is every reason to believe the treatment will be of benefit.
On a lighter note to end today’s entry, Mum & I had a taste today of what it feels like to be a celebrity – thanks to our little Western baby! We were constantly surrounded by excited Chinese people, young and old, who wanted to say hello to Will and introduce their babies to him. At one point I left mum & Will outside a shop, only to return minutes later to find them surrounded by a crowd of what looked like 3 people deep all with their heads inside the pram! God love our little Will, he just smiled and accepted their offers of biscuits. No such offers were made to mum!
The highlight was being asked by an entire family if they could have their photo taken with us, first in a group and then individually! It was a total crack up because as they were doing it people were stopping and watching, probably to see who the famous people were, wandering off totally disappointed just to see mum & I – AKA: Paris & Nicole wannabe’s. I think Will is the perfect accessory for us!
Here’s to a Happy New Year!!
Love Nicole, Irene & Will
xxx
December 31st, 2007
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December 6th, 2007
