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.  

Just a quick update to let everyone know that the TV show 16 by 9 will be filming the fundraising segment of the Bake Sale at the Mall around 10:30 Saturday morning.  Hopefully lots of people come out to watch as it would be good to show that rest of Canada how a little community can come together to help a Family reach a very big goal for Rylan.  Once again I say Thank you to everyone!  Hope to see you all there.
The Johnstone's.