It's Saturday and tomorrow will be one week that we have been here. Sometimes I feel a little homesick but it helps that we can Skype the families.  The days have gone quickly as we are busy taking Rylan to all his appointments.  Today we found out Rylan is to have another MRI to have a better look at his Pituitary Gland.  I guess him fighting sleep didn't help the situation.  When the Doctors came in they confirmed that on October 3rd will be his next Stem Cell day.  Can't wait for that day.  After lunch we took him to his Opthomology appointment and then to his Acupuncture.  Alicia was very brave today and asked how much the needles hurt.  The Doctor offered to let her try one and she was very surprised when it didn't hurt.  The Doctor then showed her a bigger needle and she let him put it in.  She was amazed that it didn't hurt either.  In fact she said after that her arm didn't hurt at all and felt warm and tingly.  We now know that it is fear that Rylan feels when he gets upset not pain.
Alicia and I are starting to feel a bit of cabin fever so the walks in the afternoon really help.  Today we walked around the small lake we spotted from the hospital balcony.  It's beautiful!  There we people flying kites, young couples walking the paths holding hands and taking pictures of each other.  The gardens there are beautiful and plants that we have as houseplants grow outside here.  We saw a temple and another building which we weren't sure what it was that was very impressive.  Many people stared but some said hello and smiled.  Maybe they are getting use to seeing us.  Tonight we are having Pizza and a Corona.  Makes us feel a little like we are closer to home. 

Today is our 5th day in China.  It's hard to believe.  Yesterday Rylan had his UltraSound which went really well. Then after lunch they came to sedate him for his his MRI and EEG.  The little nurse named Amy came into give him the medication and told us it would take about 20 miinutes to kick in.  Well 20 minutes came and went and still no sleeping Rylan.  So 10 minutes later we got him to sort of be sleeping but when they but him on the gurney to take him for his MRI he woke right up.  Off we went anyway thinking that the rocking would put him to sleep. NOPE!!!  He was still awake.  So we stopped outside the MRI room and they called the Doctor who came right away.  They gave him more sedation and he laid there giggling and doing his Rylan Chatter.  As this was going on another family was bringing in there father who looked like he had had a stroke or something.  Then the yelling and the arguing began.  Alicia and I stood there in shock.  They were arguing over who was going to get to go in the MRI first.  Our Doctor saying we were and their Doctor saying they were.  This went on for quite a few minutes until the Radiologist came out and said that they couldn't do Rylan because he was STILL not asleep.  Everyone was amazed.  It was then decided that he would go and have his EEG that the MRI would be done the next day.  So off to EEG where he actually went to sleep.  They hooked him up and turned on the machine which Alicia had seen before at Children's.  They did something a little different they turned on a strobe light to see if they could get Rylan to have a seizure.  Sure enough he did.  That was a little hard to watch but thankfully with him sleeping it didn't last long.  After they removed the cap for the EEG the decided to give the MRI a go again.  We headed back and Alicia started taking off all her jewellery so that she could go into the room with him.  You can't have any metal on when you go into the room. Then they reminded her to take out her nose ring and she stopped and said she couldn't.  I then stepped up and said I would go in.  I have to say that I was very nervous.   For those of you that have had a MRI you know how loud it can be. Just as we went in the room you know who woke up.  I thought"Really!"  But in that he had more sedation than the average little one, he was quite docile.  So off we went.  The Nurse put him on the MRI and loaded him in.  The machine made so many beeping and roaring noises I thought Rylan would be scared to death.  But he actually seemed okay.  After a few minutes I could see that he was having another little seizure and couldn't wait for this to be over.  After all that we got him back to the room and laid him down expecting him to go back to sleep.  No he sat up slipped himself off the bed and began to play.  Unreal!   Alicia fed him dinner and then about 8 he fell asleep.  It was quite a day for a little guy.  Today he woke up early and I got him and put him in my bed where he fell back to sleep.  He is getting his times a little straighter.   We were all up by 6 as we were quited excited about the Stem Cells being delivered around 9.  First Strawberry the nurse came in and put in the IV and Rylan never even made a sound. We were prepared for screaming and crying but it didn't happen.  Then those magically little miracles arrived.  They hooked him up and we watched them drip down the tube and into Rylan.  This is what we had hoped, wished and dreamed about and it was happening.  I kept watching Rylan seeing if there was any adverse effects but here was nothing.  He just asked if it was all done.  Amazing.  Today Rylan has been extra vocal.  It started when we woke  up.  Asking for Grampa and just chattering away, much of it making perfect sense.  Alicia is quite amazed and thrilled about this.  We are curious if the Acupuncture has had something to do with it.  After lunch we went for a walk around the block.  A Chinese block.  It's not your usual block.  It would be more like 6 of our blocks if not more.  We saw lots of statues, apartment blocks a very large school and I think we were a bit of an attraction too.  Alicia's blonde hair gets quite a bit of attention.  LOL!  It's a definite head turner.  The rest of the day was spent at the Opthomology clinic and at Acupuncture.  We then came back had a bit of a rest and then went down to the kitchen and made Spaghetti.  Rylan seemed to really enjoy it.  I know I did.  I hope this gives everyone a little insight as to what are days are like here in China. 

China day two and this last 24 hours has been amazingly busy.  We have met the lovely kind nurses, we have met Doctors who specialized in Stem Cells, Opthomology and Acupuncture.  They are all very kind and very thorough.  We started yesterday by meeting the Stem Cell Doctors who wanted to know every detail about our Rylan.  They wanted to understand all his diagnosis and what happened to him at birth and his Adrenal crisis.  In the afternoon we decided to go with some other families by a bus that is provided to us, to the market.  Oh my Gosh!  Now that is a cultural shock.  Take Costco times it by 10 and fill it to the brim with people and you get the market at Guangzhou.  This apparently is a small market.  The food was unbelievable.  There is every kind of exotic Fruit and Vegetable that you can think of.  The meat was a little bit of a shock as well. No part of the animal is wasted.  I think our Interpreter found us a little amusing when he was giving us the tour.  He told us all the different things you could get and I wont go into great detail.  I did find that food is really not that cheap here.  I had been told it was.  We spent 378 yen which is about $60 and really we can away with 2 bags.  We bought bananas, Applepears, kiwis. milk, sugar, \yougart, grapes, and we found the International part of the market where we found some Spaghetti sauce and noodles.  We will cook those for Rylan.  We had to buy ourselves some mugs, glasses and a couple of bowls and a bigger bowl for making pudding and stuff for Rylan.  It was an amazing experience and we enjoyed it all.  \
|This morning Rylan went for Acupuncture.  He was quite taken by the Doctor.  He hugged him and held his hands.  We were in a bit of disbelief as he usually is quite shy about people he doesn't know.  He had this strange wood box with herbs put on his head and then he went into another room where they did his acupuncture.  He will have acupuncture everyday.  Getting a few more acupuncture needle sights each time.  I was expecting him to loose it but he didn't.  He co-operated until another little boy who is here for stem cell treatment, started crying.  He got very upset and had a small seizure.  He was ok though and we talked him through it.  He is such a brave little boy.  He makes me so proud.  I can't think how I would be if I was blind and all these strangers were poking me and doing strange things to me.  This afternoon we went and saw the Opthomologist and she said pretty much the same thing as his Doctor in Canada.  His eyes are perfect.  She is waiting for the MRI that is planned for tomorrow to see how his Optic nerves are.  He then went into another room where they put these glasses on him that act on his Pressure points around his eyes.  He laid there for 20 minutes.  He will go back at least 5 times for that maybe more.
Tomorrow he will go for Ultrasound at 8:30 and an MRI and EEG at 3:30.  He will be sedated for these procedures.  The Doctors are looking at why he has seizures and how big his Optic Nerves are as well as any brain Malformations. 
Friday he starts his Stem Cell treatments.  We are so excited for this.  We have met families who have been here 3 to 4 times.  One family from Australia who have a son who is very delayed.  They have been here 3 other times.  Another family is from Hong Kong and this is their 5th time.  Both families said that they have had great success.  We said that there was no way we could come back that many times.  Wow!  When you think how much this is costing them but I know there is no way to put a dollar sign on your child.  You will do what you have to, to help them.  I know that we would. 
Right now Rylan is bum scootiing around the room investigating everything with his hands.  He will do this for ages, entertaining himself.  We are going to take him to the Common Room to see what toys are there and to make his dinner.  I will try and Blog again tomorrow. 
Ill sign off by saying what Rylan says...Bye, Love ya, See you tomorrow...

Good Morning.  It is our first morning in China and to say that the last 48 hours has been uneventful would be a big lie.  We left Gibsons on Sunday on the 8:30 ferry.  Stopped had breakfast at White Spot and then off to the Airport. The parting was mixed with excitement and yes anxiety.  I know Ryan and Rob are going to find it hard without us.  We are going to miss them but we are going to be very busy with Rylan.  The plane ride was good from Vancouver to Hong Kong and the employees of Cathay Pacific were outstanding.  But man every time you turned around they were feeding you.  So many meals and snacks.  Rylan wasn't too keen on his meals but its ok as we had brought lots of fruit and they did supply him with yogurt.  The plane from Hong Kong to Guangzhou wasn't as great.  It was an older jet and there was Lightening and lots of rain.  Rylan was now tired and hot and didn't want to participate anymore and let us know.  He was quite loud and cried. Poor little guy probably thought were never getting to China, I know Alicia and I didn't.  We were so thrilled to see Peter our escort at the Airport.  We gathered up all our suitcases, carry ons, computers, purses and backpacks and it was quite a scene.  I can't believe we brought so much stuff but we need it.   When we got to the hospital after a one hour drive we were shown our rooms.  Well its not the Hilton but in saying that it is clean with 3 single beds a bathroom and a fridge.  There is a TV and a DVD player and we get 2 English channels.  Its not so bad at all.  The Beds aren't bad and we have a small deck off the room. We unpacked and by then it was about 36 hours since we had started our journey.  Off to bed which Rylan is not too pleased about because to him it's daytime.  But with a little cajoling and Grandma being very firm and then taking him to bed with her he fell asleep.  Today we will look around and find the kitchen and the common room.  I am going to try and Blog everyday.  Talk to you soon.

School

 

September the 4th was a huge milestone is Rylan's life.  He started School.  Auntie Ang took him to his first day.  He walked across the street up the sidewalk and into his classroom with the help of his walker.   We were all a little nervous as to how this would go but Rylan loved it.  He walked around his classroom getting used to the sounds and the smells and smiled his big beautiful smile and laughed out loud.  Auntie Ang was so proud she stood outside and cried.  Alicia and Ryan were sad to miss his first day as they both had to work but were so happy that Auntie Ang could stand in for them and excited that it had gone so well.  Alicia took pictures of him sleeping on the big mat in front of the fireplace later at home as he was so tired.  For now Rylan will be going to School twice a week for short periods so he can get use to the extra stimulation.  I think this will be a great adventure for him. 

As I sit here I realize that there is only 15 days till we start our great adventure to China.  I am feeling excited, anxious and grateful.  It is hard to explain how grateful we are to everyone who helped.  To all of Rylan's Angels who have always been there helping and never complaining with all the work they took on for the fundraising.  Without them we never  would have been able to raise all the money we have.  Thank you to the employees at St Mary's the employees at Terminal Forest Products, Wheatberries Bakery, The Lighthouse Pub.  You were more than generous and how lucky we are to live in a small town where Business's and their Employees give so willingly.  To our families who donated Thousands to Rylan out of pure Love.  Who love Rylan because he is ours and because they want to give him every chance he can have at life.  To all the ladies who did all the baking for the Bakesale.  Thank you.  Your generosity will never be forgotten.  Lots of you said it was just a little thing but to us it was a huge act of kindness.  Thank you to the perfect strangers who donated bought bracelets and some who ended up being a new part of our lives.  Thank you to our friends who donated, helped and put up with our nervousness.  Thank you to Dana McIntyre who motivated me to start this journey and helped me with this blog.  Love you Dana. To the Coast Reporter and Christine who kept us in the Paper so we could get lots of advertising.  Thank you.  I will always support you.  To the Generous people of Penticton who don't even know our Rylan but know Cheryl and the ladies at the Grocery store.  Thank you. To all the Merchants on the Sunshine Coast a big Thank you for all the donations of the Silent Auction items.  We raised an enormous amount of money with them.  To all the Players of Parkland who made the trek in the snow to show their support to Ryan and their very generous donation.  To all my new Friends in the U.S. who have listened, made suggestions and gave advise.  Thank you.  To 16 X 9 thank you for coming to Gibsons and filming. It showed who we are and why we are going. 

If I have forgotten anyone I apologize because there have been so many people that have helped donated and prayed for us.  Thank you everyone for everything.  We feel blessed.

I am hoping to continue my Blog in China.  So please check back and see if we have gotten through.  Also we will be trying to use Facebook as much as we can.  We are hoping to phone home using Gmail so if you see a weird number it could be us.