Wednesday, June 27, 2012


I know I left everyone hanging last week about our trip to Delaware.....

So here is Part Three....

We traveled to Delaware... we spent three days at the Ronald McDonald house... 

So Aaron could be fitted for a WREX.

Don't ask me what it stands for - I only know what it does.

Using bands and gravity it gives Aaron a makeshift bicep muscle.

Aaron can't actively lift either of his arms.  The only way he can get an arm up is to use his shoulder muscle to swing his arm in order to pull it up.  

The WREX holds Aaron's arm up and then Aaron can do what Aaron does best... use his shoulder muscle and his barely functioning tricep muscle to push his arm back down.

With the WREX Aaron is able to move his arm up and down, sideways and can even put it somewhat behind his back.

With the WREX Aaron can reach things more or less at eye level. Which means he can go around with a marker and draw smiley faces all over Mama's doors before Papa catches him!!!

He can reach up and rub his eyes.

He can hit his brothers... ooops.... okay.. NOT a good idea...

By tightening, loosening, removing or adding bands we can adjust the Wrex to give Aaron the best function depending upon what he is doing.

The bands along his upper arm pull his arm up.  The more bands, the higher his arm will go.
The bands at his elbow pull his arm in toward his chest.  These bands are the ones Aaron likes the least because when they are tight - he is getting serious range of motion therapy on his elbow.  It is like a built in therapist at our house!!  
The bands on his lower arm raise his lower arm up.

The WREX is not a cure-all for Aaron as it doesn't resolve one of his greatest issues and that is his inability to grasp or grip anything with his hands.  When eating, the WREX gives him the ability to lift the spoon now but eating is still a struggle because of his hands.  Eating with ease is still a work in progress!

Aaron doesn't mind wearing the WREX as long as it is for short periods during the day.  Thus, we have him wear it off and on during the day depending upon his activity.  

As far as walking with the brace -  Aaron walked on his toes for so long that he tends to pitch forward even though his feet are now flat.  We were afraid that wearing the WREX would upset his balance but we have actually not had a problem with that.    When he wears it and walks he is actually walking with a slightly more normal gait because the back brace keeps him from leaning forward!  

We are so grateful to the men at the duPont hospital for their work.  It was obvious to me how much they cared about helping Aaron gain as much function as possible using the WREX.  They were actually really impressed with how quickly he figured it out.  He is mechanically very smart and within just a few minutes of wearing the WREX, understood exactly what the bands were doing and how it was affecting his arm.  He was quick to give them instruction on what bands to place where which cracked me up!   

The nice part of the WREX is that all the parts are easily replaceable so if something breaks.. we can just call and they will send new parts.  

Now if we can just get someone to make a WREX for Aaron's hand.....


  1. Wonderful, Julia! Simply wonderful! My heart is glad for Aaron!

  2. Thta is one cool contraption !! So happy that Aaron got chosen to have one :):):)

  3. Julia, this is some a wonderful post! Just makes me so happy for Aaron :)
    Sarah G., Caroline's mom :)

  4. How can you not smile when you look at those dimples!!! So happy for Aaron!!

  5. Oh Julia - how great for Aaron. I just hang on everything you write about him and his progress as Ember is just a carbon copy in her upper extremities.

  6. Aaron looks absolutely thrilled at his newly-acquired abilities! How exciting for him to be able to explore and enjoy those things which most of us take very much for granted, but which are brand-new to Aaron. His world has expanded!

    What a wonderful invention, and how cool to see Aaron's own mechanical insights revealed - little duck to water, that boy...

    Susan in Ky
    Cousin to 2 from EE

  7. What a wonderful device! I'm sure your smart boy will figure out how to compensate for the lack of hand use. I look at that face and can't imagine anything holding him back for long.

  8. that is soo cool did u get the thing i sent u over fb

    1. No I didn't... a bit clueless here in VA!

  9. That is so amazing. I hope you are all rejoicing in his newfound mobility. It looks pretty cool, too!

  10. What an amazing gift for one truly special little boy!!

  11. How wonderful!!! I am thanking God for the inventors of the WREX, & all the caring people involved in setting it up & fitting it for Aaron. BTW, Aaron is getting so grown up!

  12. Hurray for Aaron! It's good to know we can get replaceable parts because " Mr. Nobody " in our home already broke Madeline"s right elbow joint :) Thankfully she's left handed.

  13. lol david and carolyn at mr. nobody.. gonna have to use that one :).. and look at all the WREX going around... he seems to be enjoying the new abilities :)

  14. Yeah Aaron! I am so proud for him! What a blessing the WREX is for him!


Loving words from kind people make our hearts glad!