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.