The Stairs

The stairs in Ryan and Alicia's house has always been a concern.  Everyone is always worried that Rylan will somehow get out of his room at night and fall down the dreaded stairs.  Since he doesn't walk and he bum scoots everywhere, Angela or TeTe as he calls her decided that it was time to tackle them.  So she let Rylan bum scoot to the top stair and then guided him, by making him sit and take one step at a time, till she got him to the bottom.  He loved it and really seemed to understand what was going on.  She got him to do it a few more times and was feeling confident that if necessary that he would be able to do it if he somehow got out of his room.  When Alicia got home that day and Ang told her the days events Alicia laughed and told her that she had also been working with him.  No wonder he seemed so sure of himself. 

I would like to remind everyone about the Bottle & Penny Drive on the 15th of October at Gibsons Elementary School  It starts at 9am and goes till 2 pm.  There will be coffee and Muffins.  If you can't make it out and you have bottles to donate just give me a call at 604-886-3684.  

As an update we have now passed the $5000 mark.  Thank you to everyone who has donated.  We couldn't get to China without you!

Rylan's weight

I don't think that I mentioned in any other the other blogs that a few months ago we were terrified that Rylan would not make it to his 5th birthday.  He was so thin and sickly looking, and we could actually count his ribs. Rylan's Endocronoligist suggested that they see a Dietitian but they wouldn't be able to see her for 4 months.  We honestly did not know what we were going to do.  You see Rylan does not chew and most of his food must be pureed.  He had gotten so he wasn't eating much at all.  I then got this  idea what about a Magic Bullet.  I had seen them on TV in the infromercials and Wendy and I had gotten the Baby Bullet for Ang and Dana for their little guys, why wouldn't this work .  Ang pretty much throws anything and everything in the Bullet and he loves it.  Suddenly food was fun and and interesting.  He now demands his food.  He has had Pizza put in the bullet with milk, Meatloaf and veggies, Steak, Chicken you name it, he loves it.  The funniest I think was Ryan and Alicia had always dreamed of taking him to McDonald's and getting him French Fries.  Well it wasn't McDonalds but they got KFC on their way back from Vancouver with Fries and Gravy and decided to put some of that in the bullet.  Ryan said the look on his face was hilarious.  He couldn't give it too him fast enough.  He was furious when it was all gone.  So yesterday Alicia and Angela with the two boys headed for Vancouver to see the Dietitian.   They were so excited to tell everyone.  Rylan had gained 7 1/2 pounds.  He had gone from the 10% for his age to the 50%.  Almost perfect.  We sometimes tickle him and tell him he has a little buddah belly.  He laughs, probably because we are tickling him.  He seems to be a much more happy boy.
Yeah Rylan!

 Melanie and Rylan

Today Melanie one of Rylan's therapist came to see him.  He seemed happy to see her.  

She wanted him to play a game where he took some lids out of a container.  She showed him what to do and to her amazement he started taking the lids out and throwing them around the room. She then wanted him to put them back  in the container, and once again he surprised her by doing it.  He did it again and again, having a great time.  He liked this game.  Melanie told Auntie Ang that he hadn't just improved in the last few weeks, Rylan had come up a whole level.   She said that what ever everyone was doing, to keep it up as it was really working.  He was much willing to play.  This is what we had all been hoping for.  Do you think those kitchen dance parties and the rough housing with Cohen had helped?  I certainly do.  I see Rylan coming out of his shell more and more.  Before he didn't want to co-operate and do any play time.  Now he seems to look forward to it.  It was a great day and heartwarming to hear how much he had improved.  It's the little things that makes our hearts sing.  Think what he could do with some improvement of his sight! 

It's Official our first fundraiser is going to be at Wheatberries on October 27 at 7:00 till 10:00.  The price of the tickets is $10 and that includes Coffee and a Dessert.  Not bad for a yummy treat.  Also we will be having a Silent Auction and a door prize.  We are hoping to have entertainment as well.  Hope to see you all there.  

Just an update to let you know that as of yesterday we a total of $2225 in Rylan's trust fund.  Thank you everyone that has donated.  Thank you from the bottom of our hearts.  

Fundraising

Last night we had our first Fundraising meeting.  So many great ideas came out.  Pub nights, Dessert nights, Golf tournaments, a Dinner and dance.  Silent Auctions , 50/50 draws and on and on it went.  I felt so excited and blessed that these ladies really cared.  Our man of the hour Rylan was there and putting on quite a show.  He even flirted with one of the ladies.  We were stunned as this is not like him at all.  He usually acts up when there is lots of talking and noise but he had actually bum scooted over to her and pretty much planted himself on her.  Hmm wonder if it is because she's the manager at Wheat berries and smelled of sweet things.   Cohen and Rylan were even playing ball.  In fact Rylan was stealing a ball from Cohen and teasing him.  One wonders how a Visually impaired child can even find the ball but he seems to have a sense of where things are, either by smell or by sound.  He was getting great delight in making Cohen whine for the ball and then throwing it away so he couldn't have it. It was so wonderful seeing him interact and be a typical 4 year old.  To date we now have $1825 dollars thanks to some Pay pal donations and a anonymous donation at the bank.  Thank you from the bottom of our hearts.  

Wednesday night we are having a fundraising brainstorming event to discuss some ideas for Rylans trip to China. We have had several calls from people wanting to know what they can do to help fund raise.  I have realized that more and more people are wanting to jump on board to help.  It is amazing.  Earlier today an older lady phoned the house to say she wanted to donate but didn't understand the www. stuff. She wanted an address to send a cheque to.  It was quite touching.  I promised her when we get back that with Christine Woods help we would put an article in the paper telling her how it went in China.  She said that, that would be more than enough for her.  She then went on to say that she was donating because two years ago she had lost a Grandchild at 20 hours old.  She wondered if the baby was like Rylan.  Sad! I would also like to Thank the people who have already donated!  We now have in hand a grand total of $1665.  That is not counting donations that people have promised.   If you live on the Sunshine Coast stay on the lookout there are going to be bracelets for sale in blue that have Rylan's Fight for Sight on them.  Thank you to Kim Moore for arranging that. 
Have a great day

Kents Beach

Rylan woke up very early this morning.  He new that he was somewhere different.  Even though he had his comforter and his cars sheets, it was different.  Mommy and Daddy and him had come to visit Grandma and Grandpa at their cabin that they rent every year.  He was out of his routine.  When Daddy went in he was crying but as soon as he heard Daddy's voice he stopped...There was no going back to sleep though.  Daddy put on his movie Finding Nemo and settled him down. Rylan loves to listen to movies.  Especially movies with funny voices and singing.  Grandma got up and made his favourite breakfast and they played for a while.  Mommy wasn't up yet and they had some cuddle time.  A little later Mommy got up and they went up to the store.  First store was okay but when they hit Walmart it was a different story.  Rylan was getting tired and hungry.  Rylan eats every two hours to keep his blood sugar up. If his sugars aren't kept up he can have a seizure. He was not happy to be in Walmart and was letting pretty much everyone know it.  Finally he settled down and he  was happy walking holding on to the grocery buggy.  It must be very strange pushing the buggy and not knowing where you are going because you are visually impaired.  After the store it was off to visit Rylan's Great Great Auntie Lil.  She gave him pudding. He loves pudding. As we were leaving Auntie Lil gave Rylan a donation for Rylan's Fight for Sight.  A $1000!  We were so appreciative. Auntie Lil said that she had prayed for Rylan every night since he was born. She had prayed for a miracle and helping to send him to China seemed to her was the answer and if she could have a part in this she would.  Later after we got back to the cabin Mommy put Rylan into his Mr. Turtle Floater.  Rylan loves the water.  He will stay in it for hours. Rylan has no fear in the water.  I often wonder if he would be shocked at the difference in size of the Ocean or his little pool at home.  After a while he started to shiver so time to get out.  Grandpa and Daddy had gone fishing and were home.  They caught a ling cod so that would be supper.  Supper done it was time to go and catch the ferry to get back into his regular routine. 



Today is very special in our Campaign to get Rylan to China.  Christine Wood of the Coast Reporter did an article on Rylan and his Mom and Dad. When I read the article and realized just how well Christine has explained Rylan and all his medical conditions I broke down in tears.  When I shared it to facebook we were astonished at the reaction.  Thank you everyone who immediately donated, I can`t tell you what this means to us.  We will get to China and maybe even sooner than we dreamed. 
Thank you from the bottom of our hearts.   And please no matter what size  of a donation you can make, it makes a big difference.
Love
The Johnstone Family

A day with Rylan and Cohen

Rylan's days and nights quite often get confused as with many visual impaired children.  My son will often tell us that Rylan had been up partying all night.  Which means he has gotten out of his bed and bum scooted all over his room creating havoc for the morning.  Sometimes he has pulled everything out of his closet and other times pulled out every piece of furniture that his little body can.  Ryan and Alica had to take out most of his things because they were afraid he was going to hurt himself.  He actually did pull the book shelf down.

Rylan`s Mom and Dad both start work very early and so his first Caregiver arrives at 5:15 am to take the early shift and  by then Rylan has had his first Medication of the day.  Auntie Cath as she calls herself waits till Mom and Dad have left and then she will sneak upstairs to see if Rylan is awake or sleeping.  If he is awake she will tuck him in with his favorite blanket and then whisper, too early yet Rylan have a little nap.  Sometimes it works and sometime he will loudly say NO! UP!  On those days he will be up and want a snack.  Usually fruit.  Then  it's cuddle time.  Breakfast is always Oatmeal and applesauce.  Yogurt and sometimes if he's really hungry there will be more fruit.  Bath and more kids TV shows round out his morning.

It's now Rylans favorite time of day.  It's almost Nine and Auntie Angela and Cohen will be here soon.  Auntie Angela is Rylan's caregiver from 9:00 till Mommy gets home at 3:00.  The dogs will start barking and Rylan will starting clapping and smiling because Cohen will be coming through the door any second.  He loves his Cousin Cohen who just turned one.  On many levels they are the same age with all Rylan's developmental delays.  No matter there is fun to be had.  Auntie will come through the door and he will hear Cohen's little footsteps.  A day with his cousin means absolute acceptance. because Cohen loves Rylan as he is.  Cohen will push and tug and pull on Rylan and he will laugh big belly laughs.  Auntie will have Dance parties in the kitchen holding on to Rylan because although he can stand he can not walk without someone holding him.  There will be tickling and rough housing and all the things that a little boy needs.  Cohen has changed Rylan in as he has taught him how to play and how to be with another child.  There is lunch and sometimes they go to the park.  Before Cohen Rylan didn't like the park.  The sound of the other children scared him.  At Cohen's birthday although he couldn't really take part he laughed and clapped his hands with excitement and he really enjoyed himself.  Soon it will be 3 and Auntie and Cohen will be leaving but it will start all over again in the morning because Auntie will be back and Cohen will be back to love his cousin and just be with him.   

 

Why China

A few weeks ago while once again researching Stem Cell Infusions in China I started going on my SOD/ONH facebook sites looking for other people making comments and I happened upon a post by a lovely lady named Brenda Campbell.  She was talking about going to China.  I stopped dead in my tracks and made a comment to her.  She immediately messaged me.  I was enthralled.  She explained everything that was going on with her daughter and how she had fundraised to get enough money to go to China.  Next Glynda and Paul Arnold messaged me to talk about taking their little Grandson to China. How they had fundraised  because like us they couldn't afford this without help.  I got an excited feeling in the pit of my stomach. Could we do this?  All I posted was China?  on facebook and I got so much positive feedback that honestly I couldn't believe it.  I went upstairs and said to my husband Rob, Alicia and I  are going to take Rylan to China!  His reply was simply, Okay.  I have never made such an impulsive decision in my life.  I then phoned Alicia and told her pretty much the same thing.  Funny none of us even thought of not going.  We know that if we don't do this we will regret not trying.  I read a quote on one of the blogs that said" I don't want to be in my dying bed and have to think that we didn't try everything.  I guess China is our everything.  It's our only recourse because there really is no other medical treatments.  

If you have an extra few dollars that you could donate we would appreciate it.  Not for us but for our very special little man Rylan.  

Thank you Alison