Saturday, June 27, 2015

The Magic Cup

My brain translated the face book post to read- 
If you buy this Renflo cup your child is guaranteed to drink an ounce like mine did.
The cup has an insert that only permits small amounts of liquid to come out at a time.  It doesn't matter how you are holding it, if it is tilted liquid will come out in small amounts.  No sucking skills required.  

 After reading the post, I thought if  Leo's friend, who also has WHS, can drink an ounce from this cup then so can Leo.  So I did what any respectable, loving mother, who is desperate, would do.  We drove to Whole Foods, who happens to sell these cups, and bought one.  

Looking at the above picture, one could be led to believe that Leo is actually drinking.  Don't be fooled, he loves the idea of drinking from a cup, but still does not have the ability to swallow in an organized manner.  Let me take that back, Leo will swallow if you are shooting a liquid, that is neither too thick nor too thin, into his mouth using a syringe (it must be a 3 cc syringe so that it fits perfectly into his mouth) as you repeat over and over again "Leo it is time to eat", "Quiet hands" interspersed with singing along with Barney as he visits the farm for the one millionth time.  When you aim said syringe into Leo's mouth, avoid hitting his front teeth as it will then splash back out at you.  If your aim is good, you may just get 2 ounces in over the session. We repeat this process over and over and over again for 17 minutes, 5-8 times a day.  
Now, let me tell you what the face book post really said- "I found this training cup at a second hand store and **** liked it!! Unlike a regular sippy with a valve, it's an open cup with tiny openings all around so wherever they attempt to drink they are successful! He drank a few oz the first time! He is very reluctant to try new I wanted to pass it along"

Why do we do it to ourselves, the comparing.  Just because another child can drink from this cup doesn't mean that Leo will be able to do it.  But I had to try.  I really wanted to believe that there was a "magic" cup that would suddenly allow Leo to swallow successfully.  Yes, I do believe that some day Leo will be able to successfully drink from this cup, but unfortunately there is no magic here.  All that we can do is persistently repeat the above process over and over until Leo's mouth muscles become stronger, his brain signals figure out what swallow means, and with lots of hard work someday swallowing will just happen automatically.  You see the child in the face book post never lost his ability to swallow.  He can suck successfully from a bottle.  He is ready for this cup.  Leo is not ready.  Two different boys, they have the same syndrome, but it is not fair to them or to ourselves to compare them.  Comparing only causes worry and stress and unplanned trips to Whole Foods.  

So, next time you sit and eat a meal.  Think about swallowing and say a prayer that Leo's swallowing skills will become more automatic and that his volume will increase and that we will have the stamina and persistence to keep on practicing everyday.

smile emotico

No comments:

Post a Comment