Tuesday, June 2, 2015

One Trip at a Time

It's a Minecraft T-shirt Party!!
At Shriners!

Aaron had an appointment on Monday at Shriners to get new braces and see his hand doctor.  John was along for the ride.  Well, not actually. 
We registered John for Shriners a month ago with the reality that his chances of being seen by Aaron's lower extremity doctor within the next year would be a miracle.  That miracle didn't happen on Monday.  But we did get a mini-miracle despite that closed door.  Besides a diagnosis of arthrogryposis, John also has scoliosis and so last Thursday I took a chance and called Shriners and asked if it would be possible for him to see one of the scoliosis doctors.  Insert begging here.  Praise God they squeezed him in to see one of the best doctors there and he was amazing. 
Can I just say I love Shriners?  I love that their focus is on the kids.  I love that they were willing to set aside protocol to squeeze a little boy into their schedule.  I love that Dr Pahys was willing to take the time to listen and ask questions and answer our questions.  I love that he didn't just focus on John's scoliosis. He had x-rays taken in prep for the other doctors who will come along behind him. He spent a lot of time with us considering those x-rays and talking with us and helping us figure out what our next steps will be.  He was so kind.  We were so encouraged. We left with a list of things to do that will take many months to accomplish.  In four months we will go back and hopefully get more answers.  It's going to be a process.  We will take it one step trip at a time.
It was a seriously LONG day at Shriners.  We left many many hours after arriving and drove home with thunder, lightning and sheets of rain pelting our van almost the entire way home.  When we pulled into the driveway we all wanted to jump out and kiss the ground. 

But the day was not all doctors and long van rides.  See this precious treasure??? He was Ashton on RR.

 He came home in January and his family cannot imagine life without him.  When I told him he was a special treasure he told me he was not. He was Ivan.  Oh sweet boy!!  Another Vanya for me to love!

Ivan has an amazing family.  I know they would appreciate your prayers as their one child, Olya, just had major surgery last week. Their other son Gavin (NYC shirt) is having the same major surgery on Thursday.  They have moved to Shriners until July.  I am in awe of that kind of love, sacrifice and commitment!

My boys enjoyed hanging out with Gavin in the waiting room so we will definitely be lifting him up in prayer this week! 

 Yesterday was the 32nd time we have traveled the road to Philly for Aaron.  In the coming years we will travel many more times than that now that we have another son who needs the doctors in that hospital. I could easily get overwhelmed at that number and groan at the enormity of it all. 

But when I look back and consider our lives over the last four years I would not trade those trips for anything.  Each time I have traveled to Philly I have come into contact with other fellow travelers.  Those fellow travelers have blessed me over and over and over again.  I have gotten to rub shoulders with amazing families.  Their children humble me.  I have gotten to see the bravest kids in that hospital. I get to meet treasures every single time I go!  I wouldn't trade those trips for the same amount of trips to Disney World. I would not.  I would rather rub shoulders with Shriners kids than a bunch of dressed up Disney characters. 

Yes, we forsee many trips in our future. Many many trips.  We will take them one trip at a time and savor the relationships we make along the way. 



  1. Currently in-patient at Shriner's in Tamapa with RR's "Channah"! She just had major surgery on her arm this morning. Shriner's has been a BLESSING!!

  2. And that it why we love you :). Bless you, mama and your boys! That's a lot of trips, but they have YOU to be with them and fight for them. I'm praying that God helps you keep your fighting spirit!

  3. Oh my goodness, it's "Ashton"/IVAN! He's so big! Awww it makes me happy when I see these little faces I see over and over on RR change because they are part of a family and LOVED! Precious Ivan!

    I'm so glad you're blessed on your trips to Philadelphia! God bless!
    Aw, I love your boys. Such blessings. :)

  4. We have been so blessed by the care Shriners in Springfield, MA has provided for my two boys. We only go two or three times a year and usually it is just my youngest who needs to go for his prosthetic legs. He loves Shriners and so do I!


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