Spread love everywhere you go: first of all in your own house. Give love to your children, to your wife or husband, to a next door neighbor... Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness; kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting.
Mother Teresa

Thursday, January 27, 2011


My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, PS 139:15

Something just didn't feel quite right this time. My Momma's intuition was buzzing, ...but hey, my emotions can be all over the place, so most of the time I choose to ignore those naggy little whispers.

The stirrings in my heart weren't scary, just a persistent feeling that this was not going to be an ordinary appointment for Quynh. We had scheduled this visit with her team of specialists at AR Children's Hospital couple a of months ago, so there was plenty of time to prepare for it. No reason to fret.

Marvin and I had concerns about two growths in her abdomen, but also have thankfully learned enough about KTS to realize these are part of her disease process and will come and go. So, though we were expecting that they would need to be removed, we weren't overly concerned. Move on out, nagging gut...

Our day started well. We finally cracked the code to get to Little Rock for an 11:00 appointment. That means four kids out the door to school, cleaning ourselves up, getting Quynh and all her gear ready to go, having a bag packed for me in readiness for a hospital stay, and somehow being nice to each other while we do all that before 7:15, Quite the combination to crack.

As is typical on our trips, hour one is spent mostly in quiet while we all decompress from the gettin' ready. Quynh has added hugely to her vocab since our last trip to Children's, including frequent, "are we there yets?" The first one chirped just a mile from home. This was going to be a long and winding road for her.

We arrived in time to swish into our first appt. with her surgeon, one of our fave docs. He concurred that the growths in her belly were not an urgent issue. It's always fun to watch the docs marvel at her progress. They have all known her since she was a newborn, and each has done at least one major surgery or intervention on her. She has charmed them . They are amazed at her. And, top number one thing they do....they love her.

After a bit of down time to run errands and grab lunch, we had our team appt with her vascular/lymphatic/ortho team of doctors. Quynh did better emotionally than expected . We are thankful for a bit more maturity and increased verbal skills that allows us and her physicians to comfort and reassure her. She received good reports from these dear folks, and except for some xrays requested by us of her hips and legs, we were done!

Onward to radiology for routine xrays, which we wanted designed to give us an accurate measurement of the length difference of her legs. This to help her have the appropriately sized orthotics to maximize her uneven legs to optimal height.

What a difference a year makes in attitude. Her last set of xrays last year left me feeling like we needed an exorcist after all of her screaming. This year she was talkative, relaxed and cooperative. So grateful.

Soon back at our team's office, where our friendship with the staff flows as well as all of Quynh's medical considerations, her kind orthopedic surgeon was pouring over her xrays. And, in a few moments, called Marvin and I in...with the words..."I don't like what I see".

There you go. Not expected. One of those moments when you know things are going to change. And you know you have two responses to choose from.

Am I going to believe that God is in charge and loves Quynh more than I possibly can, and there are no mistakes....or

Am I going to despair.

When the Faith that we talk about becomes very real...

Her doc went on to say that Quynh's right hip is completely dislocated, and quite deformed, and the other is quite deformed as well, but ball and socket are still together. We all sat quietly and just took it in.

What we did feel was support, that her team was grieving with us at this news, and that we will all leave no stone unturned to figure out what is best for her at this point.

I can't say I handled it all well in category 1...acceptance. For the rest of the evening, I processed, prayed, felt the wind leave my sails, let myself be in a funk, called and texted friends to share the news, and leaned on Marvin.

But, we both are choosing to emerge with our solid belief that God makes NO mistakes. And, how could we possibly doubt Him, when He has proven Himself faithful over and over and over in her life. She has been a miracle from her first day.

So...what does this mean?

We will go back to AR Children's for a series of hip xrays.

Quynh's team will consult with surgeon's around the country to see if a hip revision surgery has been done on a KTS patient (I have only found one on line...and hers was a risky case.) Because of vascular and lymphatic complications, surgery and hard wear of this kind is very risky.

We will continue with physical therapy as we have, including letting Quynh try to learn to walk independently. We can't imagine how she tolerates the pain...but despite a limp with that leg, she has not complained much.

And lastly, without surgery or casting (which she is likely too old for), she will eventually need a chair. Not the end of the world, just a new way to approach life.

Please pray with us in the next weeks as we process this, as research happens and decisions are made. We love comments and knowing that you are praying because we KNOW it makes a huge impact in her life. THANK YOU....


annellecate said...

Beautiful words about a beautiful little girl- I will pray

Jennifer Taylor said...

Oh Carol, I am so sad to read this update. We will continue to lift you and Marvin and Quynh up in prayer. As we know, God is the Healer and Protector! Much love,