Saturday, December 10, 2011

I have to say that I have been so busy that I have been tardy in updating Rylan's blog.  With this being such a busy time of year and doing the fund raising life has been action packed.  Today as I write Rylan is scooting around our Living room listening to Christmas shows and chasing a ball that has a bell in it.  It belongs to a Fisher Price toy we bought when he was a baby.  Before we knew he had very little sight.  But that ball has been a lifesaver.  He has always loved it.  Before it was just a noise maker.  Now it is part of a game.  He throws it and then listens to see if he can find it again. Most times he can.  Sometimes it gets wedged or rolls behind a piece of furniture and then Grandpa or Grandma will run to the rescue.  Patience is not his strong trait.  At times he is easily frustrated. 
This morning when I was helping him dress I noticed that he follows directions much better and although he can't dress himself he is a willing participant.  He will try to get his shirt on and helps with pants.  He doesn't fight or cry anymore.  After getting dressed he grabbed my hand and then touched my fingers and then said,"Grandma's Fingers".  For a second I almost couldn't breathe he had actually said a body part and picked the right one.  He knew what he was talking about.  I wonder if he would talk more if the Autism wasn't there but it is and we Love it when Rylan appears sometimes to surprise us.  I love the days that we have him.  Not all are easy but they are Rylan's days that he shares with us.  I would not wish for it any other way.  It's funny when you watch a child like Rylan.  You value every accomplishment that much more. 
Two weeks ago Rylan gave us another scare.  He had a Hypoglycemic episode.  He had not been feeling a 100% and had, had a little bit of diarrhea.  Auntie had been there and she knew something wasn't right.  He was crying and was inconsolable.  So Alicia came home from work.  He seemed fine then and they put it down to him just wanting his Mommy.  About an hour later Ryan came home and that's when it happened.  He stopped breathing.  Ryan yelled for Alicia to get his emergency shot and starting CPR.  They gave him the shot and he started to come around.  Alicia called 911 and the Ambulance was there with in minutes.  They took him to the hospital and by then he was awake and crying.  The Doctor said with him being a little sick he had just run out of his Cortisol.  This is a very frightening event but something that Ryan and Alicia know could happen on any given day.  No parent should have to do CPR on their child but thank God they can.  You start to realize that there is no certainty in the world and that life if precious.  Our babies are precious and with children like Rylan it is even more of a gift. 
 I would like to tell you that our fundraising is going really well.  Rylan has over $23,000 dollars in his account.  China seems so much closer.  We know of a few more donations that will be coming in.  So we are very happy about that.  We were hoping to get to $20,000 by Christmas but we have surpassed that.  Now are new goal is $25,000 or more.  Watch for our Bake Sale on the 17th of December.  We won`t be there in the morning.  We are going to be interviewed by the Global TV show 16 by 9.  They are going to do a segment on Stem Cells and asked Ryan and Alicia if they would participate.  At first they weren`t sure as they knew that they would be doing both sides and we know that not everyone agrees with this therapy.  We just wanted Rylan protected and the show guaranteed us that he would be protected and nothing would be done to harm him.  The show is also going to film some of the bake sale so I hope lots of people go out to it.  We will let everyone know when the show with Rylan will air. 
The Johnstone family is hoping that everyone has a very Happy Holiday and a Very Merry Christmas!

1 comment:

  1. Thank you for the wonderful update Alison.
    I hope Rylan is feeling better, he has to for Santa is coming! We are excited to see the 16X9 segment, and I'm so excited you are getting it out there in the media.
    Merry Christmas to all your family and all the best in the New Year. Love Wendy xoxoxo