Wednesday, January 11, 2012

Shriner's Trip #??

Monday found us dragging out of bed again at 1:10 am so we could make the long trek up to Shriners in their van....

We had a new driver for our trip...

He likes to drive FAST. Thus, we made record time getting to Philly!

Unfortunately he was also a bit bossy. He kicked his Mama off the bus when she commented on his wild driving!  Good thing she didn't have far to walk!

We saw both doctors again.  The news from both of them was a bit disheartening to hear and I was glad that Rob was along for the ride.  

From his lower extremity doctor (Dr. VanBosse) we learned that Aaron needs surgery on both his knees in order to allow them to fully straighten.  Not being able to straighten his knees means he tires very easily when he is standing.  This is definitely true!!  We talked about other possible surgeries beyond that, but I can't process more than one at a time. On a more positive note, Aaron has now graduated to wearing day braces that fit inside his shoe.  They are no longer visible and are EASY to get on which makes him very happy.  He will continue to wear his other braces with the straps at night.  

From his upper extremity doctor (Dr. Z) we were reminded again just how little function Aaron will most likely ever have in his hands/arms.  Starting Monday, Aaron will be going through a series of serial castings on his right arm in order to give him the ability to reach his hand to his mouth.  But the casting will not be increasing his range of motion.  It is limited.  So he will be able to reach his mouth but will no longer be able to lower his arm as he is now able.  It makes us both a bit sad to consider....

Aaron definitely doesn't find the casting process pleasant.

We are figuring he will have to suffer through about 8 or so different casts.  

He wanted a red cast but Dr. Z went for boring old white in order to keep the cast as light as possible.

Of course the highlight of our trip to Shriners was seeing all the families.

We took over the cafeteria at one point!!

We saw sweet Madeline and her Mom!!  Madeline enjoys casting about as much as Aaron does... poor babe!

We also enjoyed seeing Gerri and Victoria and their Mom.  

Love love love these girls!!

And little Robyn - Oh My Goodness she is precious!! 

Aaron was beyond relieved to have another boy (Fuxia) to hang with because he was a bit overwhelmed with all the girls!!

And... drum roll please...

I have been waiting to meet this babe for a very very long time...


Last May I wrote THIS POST and THIS POST after the Ferrone's met her.... When I go back and read what I wrote and look at her pictures from then I am just in awe.  

This baby was in a LAYING DOWN ROOM!  She had never been held until the Ferrone's came storming into her life.  

She spent her life just laying in a crib.  For years.  

Now look at her!  

She stole my heart completely on Monday.  She stole Rob's too.  Especially when she started flirting with him at lunch!!

Seeing her cruising around the examining room.  Feeding herself. 

It was sweet beyond words.

I am so grateful that our trips to Shriner's are not just grueling sessions with doctors.  I am grateful to be able to rub shoulders with other Moms and Dads who have children with arthrogryposis.   The encouragement we receive from the other families is priceless. I'm also grateful to be able to see all the Reece's Rainbow children whom we prayed home.  

Though we traveled in ice and snow on our way home, we can say without pause that God is good.


  1. I love the pictures! I'm so sorry that the news wsasn't better, but he sure is a handsome guy! Praying that God shows you all miracles!

  2. Oh Julia, I'm sorry the news for Aaron wasn't better. I am sure your mamma heart just hurts for him. How fun for you to meet up with those other kiddos and their moms!

  3. Seeing all of you was the highlight of the trip! Madeline says thank you again Aaron for the pretty necklace. Glad you all made it home safely.

  4. wow quite the difference a family can make! So glad Victoria is doing well. Wish I could meet all these adorable kids!

  5. I'm so glad you got to see Victoria! She is blossoming! Such a different little girl than the one I met in Ukraine. Look what love can do.

  6. Sorry for the disheartening news. I pray that God showers you all with discernment and peace as you wait for surgery. So thankful you got to meet up with all these families. Oh my what a party!

  7. Saw some familiar guys see the same Dr's we see. We'll be there on the 25th for a visit...I'll keep my eyes open.

  8. I hate to say this but I am actually jealous that we were not there!!! So thankful for all of you and your blessings!!! Let's plan better for our next visit!!! Seems like I always just miss everyone! Sometimes just by hours!!!

  9. So sorry to hear that all is not good news with Aaron's cast, but I am thankful for the strength and encouragement that you find in the other families! God is indeed good.


Loving words from kind people make our hearts glad!