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!)
