Sunday, April 6, 2014

Shriner's Recap

It's Sunday night.
Aaron and I are still in recuperating mode from our Friday Shriner's trip.  We left Friday at 3:00 am and returned home at 11:30 pm. 
It was by far one of the longest and most exhausting trips I have done.  Of course making that trip at the same time we are burning the candle at both ends doesn't help.
Aaron was of course amazing the entire time.

He rarely complains and just takes everything in stride.

The very hardest part was finding out that he is back to wearing his braces all day AND all night. 
With arthrogryposis... it is often a two steps forward, one step back condition.  Three years ago we did massive rounds of serial casting to get Aaron's feet flat and straight so that he could walk without falling.  After those casting rounds Aaron wore braces night and day for the next year and a half.  When everything looked good, we were  able to graduate to just night braces.  Last year when he had his major triple surgery, we set aside the nighttime braces for several months since his legs were in casts.  When he was finally able to go back to the nighttime braces... he had outgrown the pair he owned.  So...when he had the plates removed in the fall he was fitted for new braces.  Unfortunately we did not make it back up to Shriners until Friday due to sickness and snow and scheduling issues.  That is a LONG time to go without braces of any kind.
His feet are no longer flat and he has gone back to walking on the front part of his foot. We knew he wasn't walking correctly but we didn't know why... Not until he demonstrated his walking to the doctor did I see what he was doing. 
So we are back to full-time braces.


Aaron's eyes filled with tears when he was told but after the doctor told him that braces would have him walking straight again he was fine. 
And I promised him that he would have brace-free time so he can still build his Legos because my boy does all of his Lego creations WITH HIS FEET...
This is an Aaron Nalle EXCLUSIVE Mini-Van!
To be honest... I'm the one who is having the harder time with these awful things!

I have been grieving his loss for the last 48 hours.
He's the sweetest little guy with the most accepting little heart.  He bears his disappointments so well but dang it... I wish he didn't constantly have to deal with those kinds of disappointments!
It just kind of stinks tonight.


  1. Julia,

    Aaron is just amazing. His attitude is outstanding. Look at your son go to town making use of his 2 hrs of brace-free Lego building time. May I keep his perspective of making the best use of my time each and every day.

    Praying for his loving Mama's hurting, caring heart. ((hugs)) for you, Julia!

  2. If he will entertain the idea, could you do a short video of him building with his feet? It would be very interesting for the public, and inspiring for kids/parents facing arm difficulties.

  3. I'm so sorry, Julia! Praying for you mommy heart (AND your writing! )

  4. Aaron is simply amazing. I love reading your blog and get tears approx. 90% of the time. Is that shirt one of his drawings? He is so talented. Will keep y'all in my prayers during this transition back to braces. -Neysa

  5. I know it's hard now, but in the years to come, you will be so glad you helped keep him in those braces. Praying for grace upon grace in the transition- love kel


Loving words from kind people make our hearts glad!