I have to admit I am a bit slow in getting to my blog.  We have been home a little over a week and we have finally returned to somewhat normal.  I had a much harder time with the jet lag on the way back then I did going to China.  Rylan seemed to adapt fairly quickly and I think Alicia is adapting well too.
The rest of the stem cell injections went really well.  Rylan never had any sort of reaction other than some bad cramping from gasping the gas when they sedated him and the one small fever from when he had his cold.  The eye injections that we had worried about never even seemed to bother him at all.  We were so excited the last few days in China.  So many things were happening.  Rylan seemed to be talking more and more and one morning when Alicia was walking him he refused to hold both her hands.  Instead he held one hand and walked beside her.  That was such a wonderful sight to see.  That made us both teary.

The good byes to the Nurses was sad but exciting as we knew we were going home.  The first lag of our journey landed us in Hong Kong.  It will never leave my mind how big that Airport is.  I keep thinking of it as a huge city.  We were there for about 5 hours.  We wandered the Airport and looked in the very expensive shops, dreaming.  We actually bought a few trinkets there as they were fairly inexpensive in one of the smaller shops.  We had lunch and yes we had Sandwiches.  They tasted so good.  We then were met by an employee of Cathay Pacific who took us to our departure gate.  We were led back to that Subway train that took us there.  Wow!
 Our seats this time weren't quite as nice although we never complained.  The food was good and Rylan even ate some of it.  He does like his potatoes and veggies.  Rylan then slept most of the rest of the flight Thank Goodness.  Alicia and I watched movies and chatted and tried to sleep but I think we were too happy to be going home.

Rob and Ryan met us at the Airport in Vancouver.  It was wonderful seeing them.  We were a bit amazed at how fast we got through customs.  No problems at all.  The only thing that happened is when we found our luggage on of my suitcases was open.  Nothing of value was missing.  But a couple of the things I had bought for people had fallen out of the suitcase.  

Getting to the ferry was a happy time.  I realized that the ferry was taking us home to the rest of the family and our friends.  

Since we have gotten home Rylan is talking even more.  He is using more words and more sentences.  He is saying things like "Daddy where are you?"  "Mommy I love you!  Where are you?'  When Auntie Ang took him to school on Monday she was standing holding his hand and he let GO!  He stood there for about 5 seconds and then he reached up and grabbed her hand again.  We were all so excited.

I know the question everyone is wondering about and some are asking and the answer is We don't know if he is seeing more or not.  We aren't positive so we can't say a resounding yes.  What we can say is when Alicia holds a flashlight in front of his eyes we think he is following it.  But with that we won't say for 100%.  He has pushed it away as well as if it is bothering him.  We need to remember that even if he is seeing more his brain still is processing it.  So only time will tell.  He will see his Opthomologist in April which will give the stem cells time to work on his optic nerves.

I will keep updating everyone of the changes that are going on.  Thank you for caring and thank you to everyone who helped make our journey a reality.

Today Rylan had his second Lumbar Puncture.  He did really well considering he has a cold.  He woke up from the anesthetic and he was not feeling very well at first.  We couldn't figure out if he was in pain, had a headache or had a belly full of gas.  The nurses and Doctor came right away and tried to access the situation.  He eventually settled and had a nap.  When he woke up he was his usual self.  We gave him some water and he kept it down fine then we gave him some fruit and a pudding and he kept that down as well.  Rylan has 2 more procedures this week.  His eye injections and his last lumbar puncture.  Also they are going to see if they can get that MRI that they have not had much success with.  Hopefully 3rd time lucky.  We have had a couple of days where we fitted in some fun things.  We went to the gift market to look for a few trinkets to bring home.  We took a cab there no problem and were amazed to see a huge building with about 7 floors of every kind of souvenirs you could think of.  The weird thing was none of them said China or Guangzhou.  I find this very strange.  There wasn't a T-shirt or anything.  We did manage to find a few things that we thought people would like.  The other thing we found amazing is that some things were more expensive than at home.  I'm not sure how the Chinese people afford most things. On the way home we got a cab and showed the driver our address.  Settled on a price and set off.  About 40 minutes into the ride we realized he wasnt sure where he was going.  He then looked at me and gestured which way.  Oh dear!  Suddenly Alicia say a building that we see from our balcony and we pointed that way...I then phoned our Interpreter and she helped.  He then started asking people on the side of the road.  Alicia and I were thinking at this point he might just drop us off on the side of the road somewhere, but he didn't and eventually we ended up at the hospital thank goodness.  We decided we had been on a great adventure but from now on we weren't taking cabs.  We would pay a little extra and get a driver.  MUCH SAFER!    Sunday we went to the Zoo.  I am so glad we went.  It was amazing!  It is the biggest Zoo in Asia.  We saw the Pandas that I wanted to see so badly.  We might not have seen the Great Wall but we got to see the Pandas and that made us happy.  We went with 2 other families from here at the hospital.  Such nice people and we have a common bond that makes it easy to be with them.  Its very comfortable, 
Today is Thanksgiving and I think it was the hardest day for us so far.  We are missing the family and yes missing the Turkey too.  I just want to say we are thankful to be here and please continue to send happy loving prayers for our Rylan.  xoxoxo

Today was Stem Cell Day. It was going to be done as a Lumbar Puncture and an IV done at the same time. We were both quite nervous about this as one of the complications could be seizures. The others were nausea and fever.   We woke up at 1:45 so we could give Rylan some fruit and a drink as he wasn't allowed to eat after 2:00.  Well that was great but then of course he didn't go back to sleep.  The nurses came in about 8 to make sure he hadn't had anything else and told us that she would probably be back in about an hour for him.  Another nurse came in to give him his daily massage and then about 20 minutes later another nurse came to escort us up to the OR.  When we got up there they  put him on a gurney and Alicia and Rylan went down  a long hallway.  I felt very nervous when I lost sight of them.  Pretty Soon Alicia was back looking very teary.  Its hard watching them putting your child under Anesthetic.
We waited what seemed an eternity but was really only about 20 minutes.  Alicia saw them with the gurney coming down the hall first.  She was very relieved.  Back to our room they brought him to recover.  I am happy to say there were no seizures, nausea or fever.  We are feeling very lucky.  He's still got to lay about another 2 hours but he has so far done really well. He has tried to get up the odd time but lays down when told to.  I hope this next 2 hours doesn't drag.  Tomorrow we are back to Acupuncture and the Eye stimulation so our day will go a little faster.  Thursday is also market day.  We don't need much but I think we will go just to get out.    We Thank everyone for their kind thoughts Prayers and Love. 

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.  

I have made the last installment on Rylan's Stem Cell therapy.  It was exciting and scary all at the same time.  Exciting because we have managed to raise the Stem Cell treatment money with all of your help and Scary because Alicia and I are not good fliers and it is a 16 hours flight.  Scary because at the end of the day we have hopes of how the Stem Cells will help Rylan, but we also know that there is a possibility that it won't give him the sight we pray for.  
We still need to raise a little more  money.  We are still doing the ongoing bottle drive and although when we take bottles in we might only get $20 it all adds up.  Rylan is still getting the odd donation which really helps. A big Thank you to Rylan's Great Auntie Andrea and Uncle Angelo, for the very generous donation.
 Rylan is doing really well with his seizures.  He is still having the odd one but Ryan & Alicia seem to handle it quite well.  It's amazing how far he has come in the last year.  He is standing more, talking more, eating more pureed foods and he is even telling us sometimes about needing the potty.  His use of his walker is fantastic. He still loves it.
Last Saturday Rylan was the ring bearer at his Auntie Angela and Uncle Brandon's wedding.  He walked with his Mom Alicia using his little walker.  When they came over the grass there were lots of tears shed.  He and Cohen looked Adorable in their little suits.  All of us  were so proud of him.  He had the biggest smile on his face.  I think he knew he made a big entrance.  It seemed to make the wedding  just a little more special.
Come September when Rylan starts school I expect we will see even more changes, as he gets his first real independence away from his very protective family.  I think the other children will really help him with his speech.  I hope that he makes some really good friends there.
Today when I talked to Angela she said that Judy and the boys were going to the Water Park.  I think Rylan will really love this as he loves to play in the sprinkler.  Rylan is getting so much move adventuresome.  Can't wait to see how the Stem Cells will help him.
We hope everyone is having a great summer.  Thank you all for all you have done for Rylan.  Please keep him in your thoughts and Prayers.

Rylan is doing really well on his new seizure medication.  He has had a few pre seizures, but no Grand mal seizures so that's been a real blessing.  I know Ryan and Alicia were getting pretty stressed before as he was starting to have more and more.  Alicia had not been sleeping but now with Rylan feeling better she is feeling better too.  Rylan has another worker now to help Angela with getting him more mobile.   Her name is Judy and she is a behaviourist. She and Angela work together two days a week to help Rylan with some of his Autistic tendencies.  Rylan seems to really like her.  Judy will be taking him swimming two times a week.  Rylan has always loved the water and swimming.  Rylan also has a new walker.  To every one's surprise he likes it.  He actually will hold on and push it.  We are all praying that this will be the push he needs to start his independent walking.
With spring and the warmer weather Rylan is getting outside more which he loves.  The other day he was out sitting on the grass(something he wouldn't do before because of the textures) and he was playing with a blade of grass.  Alicia noticed he was running his fingers over it and then he did something that surprised her.  He put it in his mouth and actually chewed it with his teeth.  She was so excited as he won't chew anything.  Alicia said he actually looked like he was trying to taste it.  Maybe this will be the start of something.
We have up to this point raised almost $35,000.  It is exciting.  We are still getting some small donations which is really great.  I have to make the final installment for Rylan's stem cell treatment on the 2nd of July.  It will be one exciting day.  Once again I thank everyone for their kind words of encouragement, their prayers and the donations.  Rylan would not be going with out all of you.

So many exciting things to talk about in this blog.  We have made our first deposit for Rylan's Stem Cells  and today I went and put a deposit for our flight.  We leave on September 23rd at 3:00 in the afternoon and arrive in Guangzhou 16 hours later.  We have one stopover in Hong Kong.  If this had been for pleasure it would have been fun to do some sightseeing.  Oh well another time.  We are flying Cathay Pacific and so far they have been very accommodating.  They will have a wheelchair to help Rylan on and off the plane and he will have an escort thru the terminals as we will need all the help we can get as Rylan won't be able to walk and his stroller will have to be checked with the luggage.  Cathay has also said they can accommodate his food as it has to be pureed.  We can bring oatmeal for him so that's ok. We will get to sit in seats that have more leg room and that are close to the bathrooms.  So far so good.   Hopefully they will come thru with all that they have promised.  We will be picked up at the Guangzhou airport by an Interpreter and be escorted to the hospital.  The next morning Rylan will be assessed by a group of Doctors and Therapists.  After receiving his Stem Cells we return to Canada on the 14th of October.  I think we will celebrate Thanksgiving on that day as we as a famly have much to be Thankful for.    Hopefully we will be even more Thankful when we get back and those Stem Cells have started working their magic.  

On a different note Rylan has started his new Medication for his Seizures and he has started to talk lots more.  He hasn't had any more seizures that we know of.  So once more I say Thank You for all the support that everyone keeps giving.  Please keep Rylan in your prayers.

One more Diagnosis

Friday Ryan and Alicia took Rylan to Children's Hospital because lately he had been having seizures. It was very nerve wracking for them.  Rylan had to have EEG and it wasn't fun for any of them.  When the Doctor connected the electrodes to his head he became quite upset and quite agitated.  Ryan and Alicia tried to keep him calm but he cried for about and hour and a half.  When it was all done they had an appointment with the Neurologist.  She told them what I had suspected that Rylan had developed Epilepsy. While he had been attached to the EEG she had gotten so much good information.  The strange thing was that it was the left side of his brain that was misfiring and when he had, had the strokes when he was born it had affected the right side.  The little bit of vision he has is also on his left side.  She found this quite interesting.  The exciting thing was when she was doing his physical exam she was shining the light in his left eye and he was trying really hard to see what she was doing and he was following the light with his left eye. 

After they had seen the Neurologist they went to see Rylan's Endocrinologist Dr. Chanoine who came in on his day off especially to see Rylan.  He changed up some of Rylans Meds and told Alicia and Ryan what a good job they were doing. Dr. Chanoine always makes them feel good as juggling Rylans Medication is a bit complex. Then it was back to see the Neurologist to be told that they would have to start Rylan on anti-seizure medication., but with the medication Rylan would be able to concentrate better and it would help him learn.  It would help his lashing out and mood swings.  When they got back home they came for dinner and we talked about this new diagnosis. What it would mean to Rylan and to them.  To my surprise they told us it was just one more diagnosis and they would deal with this as well.  I am not sure how well I could walk a mile in their shoes.  It would be exhausting to have to live with the stress but I guess as they quite often say, It is their life and they have to live it the best they can .

Now for some good and exciting news.  We have been accepted to go to China to the city of Guangzhou on September 24th, 2012.  We will return home on October 14th.  Rylan will get at least 8 packets of Stem Cells.  While we are there he will receive Physiotherapy, Occupational Therapy, Fire cupping and either acupuncture or acupressure.  He will be in some sort of Therapy 5 to 6 hours a day and receive stem cells 2 times the first week and three times the 2nd and 3rd weeks.  We are hoping that we can still raise a little more money as the more we raise the more packets of Stem Cells Rylan can receive. 

We the Johnstone family want to thank everyone who has donated money, the ladies who continually give  so much of their time and energy.  The people who sent their prayers and Love and believed in our cause.  We have a dream and you are helping us realize it. 



A friend of mine commented that I hadn't updated Rylan's blog lately and I realized that I have been so busy with life that I honestly haven't had time.  We have had some illness in our family and I have been so busy dealing with that, that I have not had time or the energy. 

Rylan is his usual happy self these days.  I couldn't have said that a few months ago.  But I can now and love to hear that laugh he gives as if he is in on some joke that we are missing.    Everyday he says or does something that amazes us or surprises us.  Tonight as his Mom was helping him eat he wanted to do more of the scooping by himself.  Alicia does hand over hand feeding and usually after he has put the spoon to his mouth he lets go and then grabs it again when the spoon has been refilled.  Tonight he was not letting go and trying to discover just where this yummy food was coming from.  As he was scooping his food Alicia was saying scoop.  All of a sudden Rylan starting laughing and starting saying SCOOP as they were scooping up the food.  Another new word.  It sometimes takes a while to teach him a word and then you think he might not remember it, but somewhere down the road he will blurt it out.   

I sometimes wonder if he has the whole English language in there, stuck somewhere just waiting for the person with the right key to come along and unlock it.  To set him free from his Autism.  As I have said before his Autism reminds me of a curtain that he sometimes peeks out from and we see the real little boy that is hidden back there.  We don't want to lose this
 Rylan just set him free from his curtain. To be able to understand him, to teach him.  Sometimes I feel like the Blindness is second to the Autism.  I was thinking the other day how  you teach a blind child by touch and sound.  With Rylan he hates texture and doesn't like you to hold his hand and touch things.  He does love sound.  He loves to listen to voices and to music.  Some music he loves others he will tell you "NO" and "STOP" showing his displeasure. He loves to listen to movies and cartoons.  He will try and imitate the voices and laugh out loud when he gets it right. 

The other day Liz from Community Services brought Alicia his registration for Kindergarten.  Ryan and Alicia had longed for and dreaded this day.  Longed because he would do what all little boys do, go to school.  Dreaded because if he doesn't like something he can be quite challenging.  Only time and Rylan will tell us how it will go. 

16:9

Well as you can imagine there was a lot of nerves leading up to the premiering of the show
"Selling Hope"on 16:9.
We weren't sure what to expect on how Ryan, Alicia, and Rylan would be portrayed.  I happy to say we needed not worry.  They did great! Ryan did most of the talking ,but both were honest and articulate and
and I think that most people were sympathetic to them in understanding that this is their chance to make a difference in Rylan's life. I think Alicia said it best when she said she doesn't want any regrets as to everything that they can do for him.  She doesn't want to die thinking she should have done more.
Thank you everyone who watched and gave us such positive feedback.  We couldn't do this without you.

Rylan turned 5 on the 16th of January. We had Rylan's Angels for cake and a visit on his birthday and then on the 21st we had a family birthday party.  He was so excited. He giggled and ripped at the paper and really had fun with everyone making a fuss over him.  It is amazing the amount of change that we have seen in the last year.  He's gained weight, seems to be talking more but the most important thing is that he is a much happier child.  He belly laughs and really tries to play with Cohen.  The therapists really see signs of progress in speech and play. Now we are hoping that maybe this year he will walk and maybe potty train.  Those would be huge accomplishments for him that would really make a difference in his quality of life.  
We have reached another milestone in our fundraising efforts.  We are now at $30,729.  I got so use to saying we need to raise $40,000 and the other day I said to a friend, we need to raise under $10,000.  It made my heart pound.  I was elated.  Soon we will be able to say we have reached our goal and we will be off to China!
Once again I want to thank everyone who is making all this possible with support, prayers and tons of love for Rylan.  

So much has happened in the 3 weeks since I wrote Rylan's Blog that I'm almost at a loss as to where to start.  On the 17th of December so much happened that my head is still reeling.  There was the bake sale that I have to say was an amazing success.  The people who baked for Rylan were amazing and generous and kind.  I can't even begin to explain how in awe we were as a family to see the generosity.  Some ladies had given an entire day to bake for the Bake sale.  There was so much baking that the 3 tables that were set up could be refilled twice.  The people who bought were also beyond generous.  Some people didn't even buy they just donated.  We were completely blown away.  How much did we make?  We made $950 for the bake sale and another $140 for bracelets.  Thanks you Sunshine Coast for your love you have shown for Rylan.   It brings tears to my eyes. 

The next big thing on the 17th was the interview with 16 by 9.  As I told you in one of the other Blogs they wanted Ryan and Alicia to do an Interview on why they wanted Rylan to go to China for Stem Cell Infusions.  Carolyn Jarvis the Anchor of 16 by 9 and Kirk the cameraman met us at the mall and yes she is as beautiful in person as on TV.   They wanted to shoot some of the Bake sale and get some of Rylan's Angels in action.  They also wanted to get Rylan making an entrance and he did not disappoint.  He was laughing and giggling as he walked towards the tables that were set up.  He hugged and kissed everyone that came to say hi.  He especially liked Kirk the cameraman.  He kept hugging him and laughing.  He then heard his Grandpa who happens to be one of Rylan's favourite people.  He hugged and kissed him and made everyone laugh and smile to see the joy on his face when his Grandpa picked him up.  Wendy and Cliff Moss came to present Rylan and Alicia with a Cheque from the Lion's Club for $500.  They had just come from selling trees from the tree farm and Cliff said they were wet but we got pictures of them and so did Kirk. Maybe they'll be on TV.  I then moved away from the action with Carolyn and we chatted about Rylan his diagnosis and his challenges.  She seemed to really want to understand all his problems.  She then wanted to go back to Ryan and Alicia's home to do the Interview.  Kirk was really taken with the yard hoping to see a Bear or the Deer that Ryan had told him about.  Well there wasn't to be a Bear sighting but a Mama Deer and her Fawn showed up to be filmed.  Hmm wonder how they will fit in with the story.  Kirk spent a lot of time setting up his equipment and Carolyn asked questions.  Rylan was getting hungry and it was time for his lunch.  Rob and I took him in to the kitchen and fed him.  I could see that Ryan and Alicia were doing  a really good job of explaining and answering all of Carolyn's questions and thought this would be a really good time to keep Rylan busy by taking him to the park.  Grandpa, Rylan and I and two of Ryan's dogs went across the street to the Accessible Playground at Cedar Grove School.  We pushed Rylan on the swing and played with him there until we were cold and I needed to get back to the Bake Sale.  We took Rylan back across the road to Mommy and Daddy and Rob and I headed back to the Mall.  When I got back there I was shocked that there was very little left of all the baking.  It was an amazing sight to see how much had been bought.  

I just found out a little while ago that Rylan's segment on 16 by 9 will air on January 14th at 7:00 pm on Global.  I got an email the other day from Carolyn thanking us for letting them in to our lives.  I hope that they understand that we were happy to share a little of Rylan and maybe if another family sees the show that it gives them some hope for their Child. 

The Johnstone Family would like to wish Everyone a Happy New Year.