Tuesday, January 31, 2012

Splish Splash - Taking A Bath

One of the most common challenges people who have Down syndrome face is something called hypotonia.  According to the National Down Syndrome Society, it is reduced muscle tone that occurs in virtually all infants with Down syndrome.  The NDSS goes on to explain that the muscle weakness can range from mild to moderate to severe and that common hypotonic symptoms include a lagging head when the child is sitting and an arching back when being carried or lying on their stomach.  Hyptonic children will also tire more easily and will adopt movement patterns that require the least expenditure of energy.  

The crazy thing about Joey is that physically he seems very strong.  However, despite seeming so strong, he has pretty severe hypotonia.  Sometimes it is hard to see similarly aged children who have Down syndrome who are already crawling, pulling themselves up and some are even walking.  I work really, really hard on not comparing Joey to where Tommy was at his age, where my friends' kids are at his age or even where other kids who have Down syndrome are at his age.  It's unfair to him, to us and to everyone else.  Instead, we buckle down and keep working hard at every little victory and milestone.  I think the reason it makes me sad sometimes is because I want him to feel that independence of exploring and pulling up on things.  I want him to see the world from the standing position because his nystagmus makes his little eyes jitter like crazy when he is trying to crawl and see.  

One of the challenges with the low muscle tone has been bath time.  Bath time should be fun!  We want him to be able to explore his world, work his muscles in all different directions and enjoy himself.  In the process of trying to make his bath time more enjoyable we are trying out some different options.  Here is Option One-- The Dream Baby Seat.  This one is awesome because Joey is sitting up and his eyes are steady and he can't aspirate any water.  It makes bathing pretty easy, but it's still kind of tough to get everything washed up.  It does make washing his hair really easy and he is a big fan!

Option 2 is one we borrowed from a friend.  It's by Swimava and is really cool, but it's a little bit small, so we've also purchased one from Water Way Babies.  We also purchased a "pool" from Water Way Babies and are going to be trying that out this week.  For now we've been using the swim collar from Swimava in the tub.  He really likes being able to wiggle around, but with the swim collar it is tough to keep him from aspirating water in the tub.  Somehow he manages to get water caught up around his neck and then he ends up swallowing and choking on it.  We are working on perfecting the swim collar usage.  

Bro-- what is going on here?

Up on my knees!

Mom-- stop torturing Joey!
Two Awesome Giveaways!!!

Any comments up until Friday, February 10, 2012 will be entered in our giveaway of a pair of awesome Stonz Booties.  

This week we are also giving a way a Foursome to the Wayne Homes Chili Open, which benefits the Akron Rotary Camp for children with special needs.

The Rules

1)  To be entered to win a pair of Stonz Booties, just leave a comment anytime today through Friday, February 10, 2012.  Every comment is an entry.

2)  To be entered to win a Foursome for the Arctic Golf at the 2012 Wayne Homes Chili Open, leave a comment anytime before this Thursday, February 2nd about your favorite summer camp experience or about whether or not you'll send your kids to summer camp.  That winner will be announced on Thursday.

Good luck!!!!


  1. I'm looking into the first one for Hailey. I'm impressed that he tolerated #2...Hailey doesn't like anything around her neck. He is such a cutie!

  2. I was wondering about bath time. So far I have to lay Riley down flat in the baby bathtub and he is almost too long for it now. I tried the ones that slant upwards but he doesn't do well in those. He flails all around and ends up throwing his leg over the edge and getting stuck in really awkward positions. The baby bath rings are really hard to find nowadays.

  3. The seat seems like a lot of fun and Joey looks happy! and I think the second one would be awesome for the pool! ;)

  4. cool! Thanks I didn't know about those :-D


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