August 3, 2015


Addison has started to show signs of healing in his mouth.  And with the structural issues finally resolved he has been working hard at oral placement therapy for the last four months to build muscle strength and coordination in his mouth.  His hypotonia will never improve so we really don't know if, how or when we will ever see an improvement in swallowing but we continue to hope that one day all this will be a thing of his distant past.  And in the meantime I am going to trust that one day he will simply take off eating and that will be all she wrote.  And so I feel as if my job at this point is to simply keep him nourished and gaining weight until that time comes.

But in the meantime therapy comes in all sorts of shapes and sizes.  Addison's issues are so unique that most of his therapy is trial and error.  And it looks different everyday.  It will most likely look different from anything you would expect.  And, to be quite frank, many days I don't even know what therapy will be until the moment strikes.  

Addison is starting to show some interest in food... as a toy more than something to eat.  But interest just the same.  And there has been some indications his taste buds may be healing.  We work everyday to try to promote greater interest in taste and texture.  This has to be a little tricky because food has not been Addison's friend up to this point.  Kids with Down Syndrome are notorious for food aversions and the last thing we want to do is create anymore issues with eating. 

One day I was trying to think of ways to get him to taste food.  I can put any toy on his high chair and he will play with it and put it in his mouth but he rarely if ever will put food in his mouth and will often resist if we offer him food.  I thought maybe if I tried it in reverse I could get him to taste something if I disguised it as a toy.  And maybe, just maybe, he would taste it.  And he would like it.  And he would come back for more.  And at long last he would start to have some positive interactions with food and his poor little mouth.  

I looked around for something not too messy for eating out of the high chair and settled on raisins.  And then I thought I had better not put it in a bowl because he might recognize it as food and that would be that.  There was the question of what to do.  In the end I just put a pile of raisins on the floor with his blocks and balls and other toys.  And then I backed away and did my work in the kitchen pretending I wasn't looking to see what he would do.  

And guess what.  It worked.  Sort of.  He played with the raisins.  He spread them all around.  He put some in his mouth.  I don't think he chewed or swallowed even one.  But he had fun with them. 

Addison can become easily overwhelmed so we limit his toys to just a few at a time.  And he needs a lot of repetition to get into a toy.  So every morning I pull out a few toys and put them in his play spot for the day.  We rotate these toys everyday so he is working on the same skills but with a different set of toys each day.    At the end of this therapy session I left his raisins there with his toys for when he came back for his afternoon therapy session.

Except, it happened to be Wednesday.   Which is a massively busy day in our house.  Addison's Physical therapist came in for their weekly meeting.  And then Nathaniel's trombone teacher came in.  And then Aedan's trumpet teacher.  Later a friend from church picked the three boys up for their monthly orthodontist and luncheon date.  Our neighbors daughter in from the shore stopped by as did Allen's buddy and our contractor.  The UPS man and FED-EX were by and the Avon lady.  

After dinner, when we clean up Addison's toys for the day, Emma pointed out there were all these people coming and going all day.  And what could they possibly be thinking about us having raisins all the floor?  

First, I had to giggle.  Because since Addison entered our world our perspective has changed.  A lot.  I never even thought twice about the fact that raisins were food.  And they were on my floor.  And I was hoping my baby would EAT them.  

 Then I thought for a few minutes trying to imagine what others would think.  I finally concluded, if it was anyone else's house they might have a lot to say.  But anyone who has been around our place for any length of time, wouldn't even think anything of it.  I am still not sure if that is a good thing or a bad thing.  But that is the happy reality of our life thinking outside of the box.    

1 comment :

  1. that is just so cute! What a great idea to get him to taste and experiment with food. He looks so good in those photos; just a little boy with his snack baggie. It's such a blessing to see how far he has come in the so little time