Thursday, September 5, 2013


I know two posts in one week, Crazy!

I wanted to share something new and exciting that we are trying with our dear Jacob.  Yesterday, after a few weeks of waiting, we went into Hi-tech Bracing in Lethbridge Alberta to pick up Jacobs new Dynamic Movement Orthoses (DMO). It is a custom made snug fitting body suit that holds him in proper alignment!  It is a bit costly, but we were happily surprised that our insurance company paid the whole cost, so it is worth taking a look at. I have included the link to the DMO website below.  Jacob was measured for it here, it was made in the UK and sent back to Hi-Tech Bracing where we went for a fitting and to pick it up. 

So here is the scoop as far as I understand it... The suit is built to support where each person needs it most.  Our Jacob tends to lean to the right and hit his head on the bar on his chair~ not good.  He also scissors with his legs and his arms twist so that his thumbs point down instead of up. (I'm sure there are technical words for all of that, but this is "mom language"!) Our hope is that the suit will help with some of this. Plus it really looks like a super hero suit and everyone needs a super hero suit right?! 
Because a picture is worth a thousand words I took a few!

This is Jacob sitting with his "super suit" on.  It goes under his clothes.  There are zippers on both sides of his legs for easy diapering.
You can see by his "No" face just how he feels about it!
Hi-Tech Bracing, Body suit, super suit,
Again with the "NO"! 
This is Stephanie Hazelwood from Hi-Tech Bracing! (We love her!)
You can see how Jacob is trying to scissor with his legs, soon after the picture they flipped back to both sides of the pummel.  I don't think he has been able to self correct that before the suit!

DMO suit, orthoses
It's hard to tell in this picture, but I was amazed at how tall he sat in his car seat!
(He is still not impressed)

Jacob has been sitting to the side for many years and his brain is use to the way he holds himself in space, so when he puts the suit on, the feedback to his brain is different and that is why he is not appreciating it yet.  We were told he may feel almost drunk.  It takes time to get use to it.  He had it on for just over an hour yesterday, two hours today, six hours tomorrow and should be up to an eight hour day by the week end.
So far I am impressed.  In just over an hour yesterday we saw less scissoring of the legs and less falling to the right His hands still twisted some, but we are told it should get better the more he wears it. As his body is held in the correct position and his brain picks up on and adjusts to the message that this is the right position it should improve! 
I have no idea if this is for everyone, but I am hopefully excited that it will help with some of Jacob's tone and maybe even allow him to have more purposeful function with his hands.  Feel free to go to the links below and talk to your physiotherapist and see what you think.  I will keep you posted on how it's going at our end!

Here are the links to both DMO and Hi-Tech Bracing.

Wednesday, September 4, 2013

The Most Wonderful Time of the Year: Part 2

I love having the school year end so my little chicks can be home and have a break from the  routines and structure, but I also love having school start so that we can get back into routine and structure! I'm such a fickle mom!
Today is the first full day of school.  Yesterday they went to pick up their schedules and get a locker.  They were home by lunch time! I still managed to get some grape juice canned and find my kitchen, but there is still a ton to do to regain order and control!  I am looking forward to it!
Aww control... Back to school also brings adjustments with Jacob's schedule. Feeding him before 10:00 am, getting him to bed on time so he can get up in the morning and figuring out his day at school.  We have a wonderful school to work with!  The administration, teachers, bus drivers, EA's (educational Aides) and students are amazing to listen and work through what needs looking at.  I am grateful.  But I always find myself debating over what to bring up and what to let go.  I have come to see that I like to have control and it is the most difficult when it comes to my children~ especially Jacob who can't speak up for himself.  (Although yesterday when we were talking about having him eat lunch in the cafeteria he let us know with out a doubt that he did NOT want that to happen!)
My goal is always to be a part of a working team trying to do what is best for Jacob and those working with him.  I never want to be the cranky mother pounding my fist on the table making demands, (I haven't found that to be very effective) but there is a fine balance between what to fight for and what to let go.  Sometimes I get it right and sometimes I don't.  I am grateful for the patience of others.
It is one part of being Jacob's mom that always keeps me guessing and I don't always like being that person who has to rock the boat. But lets face it, sometimes we don't get very far with out a few waves!  I hope that I am getting better at letting others have a turn at the ores. That's what this journey with Jacob seems to be about, learning and growing.  Some times it can be painful, but for the most part it is a beautiful experience! One that I appreciate everyday!
I hope you have  beautiful day, I plan to!

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