Saturday, October 22, 2011

Another Marathon Day

2:00 am until 10:00 pm.  20 long exhausting hours.

And the littlest.... He slept for a total of about an hour.  40 minutes going up.  20 minutes coming back.

If he wasn't so dang cute I'd wring his little neck!!

We knew that the highlight of our time while we were there, was going to include seeing cute little Robyn Nielson...

(oops - no pictures but trust me - she is PRECIOUS)

and one of the Reece's Rainbow cuties - Sophie Enberg.  Sophie just had major surgery on her hips (actually she ended up having two surgeries - the first surgery was a bit traumatic so they did one hip and stopped.  A week later they did the 2nd hip.  Poor Sophie and Mom are very ready to go home!!)

Yep - seeing Robyn and Sophie were going to be the highlight of our LONG and GRUELING day....

We figured the rest of the day would be running here and there and everywhere.

We arrived early and went straight to Orthotics to pick up Aaron's new braces. 

Then we went to sit in one of the exam rooms so Aaron could see Dr. Z (the uppers Dr.).

So I'm sitting there minding my own business (not) with Aaron happily rolling around on the stool in the room... when another family is ushered back and goes into the room across from ours.

I am of course staring intently trying to see who they are.... Or..... trying to see if their child has arthro like Aaron.  Connecting with other families is a HUGE part of the Shriners event.

So I'm 'discreetly' looking across the hall trying to see who they were. When one of the little guys turns towards me, I recognized him immediately... but from where... from where?????

I'm wracking my brain when I hear the mom tell the nurse that 5 of her children were ADOPTED.  All from Aaron's country!!!  Okay... I was no longer acting like I was minding my own business.  I ran across the hall to find out WHO was in that room.

When the Mom looked up she jumped and said, "Julia - Last time I saw you we were in Ki*v together!"

It was Sherry White!!

The little guy I recognized was Peyton from Reece's Rainbow.

Precious moments, people.  Precious moments!!

Sherry White was the FIRST Reece's Rainbow person we met across that ocean.  She was adopting three little ones - including Peyton. 

This year she went back and brought back two more.

The sweet little guy in my arms is Gavin.  One of her newest babes.  Another Reece's Rainbow child.

I just can't tell you what it does to me to share in such amazing stories.  To see Sherry in an exam room in Philadelphia with two of her 5 treasures is just priceless. 

I cry just thinking about it. 

Sophie - Gavin - Peyton - Aaron.

All four children from the same country.

All four abandoned.

All four are now part of families where they are cherished and loved.

Precious moments.

Though the rest of our day was not quite so 'happy' - the joy of seeing all the kids helped ease the rest of our day at Shriners.

On the medical side,  Aaron's feet are doing well, his elbow - not so much.  Rob and I have realized over the last few weeks that the surgery did not give Aaron all that we wished for in terms of him being able to use that arm to reach his face.  The elbow is turned correctly but it is not bending enough for him to be able to passively touch his own face. 

For the next month we are going to be manually stretching his arm and using a special brace to try to increase his range of motion.  If that doesn't work we may need to do several rounds of serial casting of his elbow.  For many reasons, we would rather not go the serial casting route so we are praying that we can reach the goal manually.

Aaron showed off his new 'standing up by himself' trick to all the doctors and nurses and therapists at Shriners.

Dr Z was stunned and immediately put in an order for Aaron to be videotaped doing it.  He wants to use the video tape in his next AMC presentation. 

Dr VanBosse was speechless.  He didn't know what Aaron was going to do when he plopped down on the floor.  When Aaron stood up on his own, off the hard uncarpeted floor without a prop or pillow, Dr. V. dropped down on his knees and pulled Aaron into his arms and just held him.  It was a priceless moment.

We have a lot to think about in regards to Aaron's arms and hands.  Dr. Z was amazingly patient with me yesterday.  I asked a million questions and he answered every one with utmost care.  Aaron longs for his 'hands to be fixed' so we spent much time discussing options for increasing function in his hands and fingers.  For now we are going to concentrate on increasing the range of motion in his one elbow.  Down the road we will address his other issues.

Before we left yesterday we spent several hours with the Physical Therapist working on braces and trying to find a device that Aaron can use to feed himself.  Since his surgery, he has been unable to use what worked before surgery.

After an hour of trying every spoon in the OT closet, we think we have a solution..... As soon as we refine our newest invention, I will share pictures and information!!

It was a LONG day.   I can't thank enough the two men who drove us yesterday.  They were so uncomplaining - even when we sat for hours in DC traffic.  Since they have to come get us from Richmond, their Marathon day lasted over 24 hours.  Fortunately, while we were having our appointments, they sacked out in the Shriner lounge and so I didn't have to worry about them falling asleep at the wheel!!

If I could just figure out a way to get this little stinker to sleep in that van..... Sigh!


  1. LOVE that awesome White family!! We're adopting from the orphanage that they were at this summer. Sherry was such an encouragement to us while she was there! So cool how God works!

    In fact, we're sitting in an airport right now - heading back for our 2nd and final trip to bring our son HOME! Woo!

  2. Lucy was so excited to tell us (and demonstrate) how Aaron gets up off of the floor now. I guess he put his skills to work in chorus. Fantastic.

  3. so awesome, julia- what an amazing time!
    praying for your sweet boy..

  4. SO cool!! That boy is looking phenomenal Julia! Love you all.

  5. I am a big Aaron fan and even though I don't leave comments I always read your blog!!! You have such an amazing family and it's so awesome how you got to see another RR family at the hospital! GOD is so good!!!! Praying for Aaron and him being able to use his arm like he would like to!!!

  6. Sounds like a wonderful and exhausting day!! Praying you can find a solution for him to be able bend his elbows more {{hugs}}

  7. Would the Neater Eater work for A at all? I've known some children have good success with it. None of them have had arthrogryposis, but it is supposed to be quite flexible. (Disclaimer - I'm nothing to do with the company I just thought of the product when you said he wanted to eat independently)


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