Thursday, February 22, 2018

Procedure Update and Fuchsia Pants

We are now a little over a month out from John’s procedure, and I wanted to give you a quick update. All in all, John is doing GREAT, and we are very encouraged with the results we have seen so far.  Thank you for your prayers!  I wish I could report he is walking and talking already, HOWEVER the results and forward momentum we have witnessed are very significant for John.  As Jesus taught us, if we expect anything we build to last, we better have a sturdy foundation, right?!  (See Matthew 7:24-27.)

The foundation is getting stronger indeed. 
Here’s a list of everything we’ve noticed so far:

-Much improved appetite, eating more quickly, taking in more food, weight gain!! (we pray this continues… John is 9 years old now and right at 40 pounds.)
-Stronger trunk/abdomen; sustaining prop-sitting with minimal support longer and better than ever before.
-Increased weight bearing on his legs when we hold him under his arms. Additionally, John initiates many alternating steps in this position!  This will make the use of a gait trainer or walker possible and effective.
-Improved energy and alertness.
-Improved eye contact that is more immediate and more sustained.
-Much improved communication in general and specifically with the use of his communication device (which he also uses his eyes to scan and then select choices on the screen).
-Fewer startles and painful muscle spasms.

Two cute examples of the improved and more immediate communication: 

For John’s 9th birthday (just 5 days after the procedure), he received an awesome set of instruments from one of his teachers.  The child loves music, and shaking a tambourine or banging on drums is something he can do by himself.  As children can be, John’s siblings were eyeing his new toys, and Daniel wanted to take an instrument off to play with it.  We told him he needed to go ask John.  Daniel went up to John in his wheelchair, inquiring, “John, can I play with your birthday gift, YES (holding up left hand in front of John’s face) or NO (holding up right hand)?”  John immediately hit the right/“NO” hand with a big smile on his face.  Ha!  Well, Daniel is pretty smart (and sneaky!) himself, so he asked John again but this time switched which hand stood for which answer.  John didn’t miss a beat and immediately picked “NO” that was now indicated by Daniel’s left hand.  We all chuckled (and almost burst out in happy tears) at this very age-apporpriate conversation between our sons, and we could tell Daniel was proud of his brother despite walking away instrument-less.

The second story has to do with John’s voracious appetite since the procedure.  He was flying through his dinner, and I asked him whether or not he wanted more.  He immediately brought his hands together and made the sign for “more.” I have never seen him sign anything that clearly or accurately.  I think I did cry this time (and let me add, I am not a big crier).  I was communicating with my son in such a real, accessible way.  We both were able to experience what it felt like to truly have a back and forth conversation.  In that moment, the communication frustrations on his part and the guesswork on mine were no longer necessary.

And this is where hope breathes in its fresh life.  A sweet sigh of relief when time seems to pause.  The hope that declares, our story is not over.  The hope from above that gives strength for another day and a childlike skip in each of our steps. 

Our stories carry pain.  They just do.  I will be the first to admit that and support you in those facets of your story.  However, because I have experienced the pain, I know our stories also carry hope.  And hope does not disappoint (Romans 5:5).

Thank you for standing by us in the story God is building in our lives.  Now, go out and share your story as well!  The Good, bad, and ugly all rolled in together, I imagine someone will be touched, and you will find your own foundation strengthened. 

Let the redeemed of the Lord tell their story.”
Psalm 107:2a

Enjoy this video of John bearing weight and taking alternating steps!  Providentially enough, this happened on February 8th, the 9th anniversary of ushering John’s twin, Warren, from this earth into Jesus’ arms. (And on a lighter note, please excuse my pajama pants he is wearing!  We had a diaper incident earlier that day at the doctor’s office, and I didn’t have a clean pair of pants for him.  So the fuchsia pajama pants had to do!)

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