mute music playlist so you can hear this beautiful script, then turn playlist back on to hear the usual playlist...thx
Friday, January 28, 2011
Thursday, January 27, 2011
AN OPPORTUNITY
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....
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....
Monday, January 24, 2011
YOU'VE COME SUCH A LONG WAY BABY!
AND MORE RECENTLY
I'M POSTING SOME OF THE EARLY PICTURES OF OUR PRECIOUS QUYNH...
SOME OF THE ONES THAT ARE EASIEST TO LOOK AT.
THEY ARE A ENORMOUS REMINDER OF WHAT A HUGE MIRACLE HER LIFE IS....
AND WHAT A JOY IT HAS BEEN TO BE PART OF THAT MIRACLE.
IT STARTED AS A MIDNIGHT CALL FROM VIETNAM ABOUT A VERY, VERY SICK BABY,
AND ....NOW THAT SAME LITTLE GAL IS PRETTY MUCH THE CAPTAIN OF THE SHIP AT OUR HOUSE.
WE DON'T SHOW MANY PICTURES OF HER FOOT...BUT TWO YEARS AGO ON A WINTER DAY SIMILAR TO THIS, WE CHOSE AMPUTATION FOR HER BECAUSE OF ITS SIZE, WEIGHT, AND TROUBLESOME DEFORMITIES.
I REMEMBER CLEARLY THAT ON THAT DAY, MARVIN AND I PRAYED AND THANKED GOD THAT HER FOOT HAD SERVED HER SO WELL TO THAT POINT.
DUE TO HER SEVERE DIFFERENCES, WE ARE GRATEFUL THAT OUR HUMANITARIAN AID ORGANIZATION WAS CHOSEN TO BE CALLED ...
INSTEAD OF AN ORPHANAGE IN VN FOR SPECIAL NEEDS CHILDREN, WHERE DESPITE THEIR BEST, THIS BRIGHT LITTLE GAL WOULD NOT HAVE BEEN ABLE TO MEET HER SHARP LITTLE MIND'S POTENTIAL.
THANK YOU GOD FOR YOUR CONSTANT PROTECTION OF HER.
AND NOW, WE HAVE NEW PRAYER REQUESTS AS WE JOURNEY BACK THIS WEEK TO AR CHILDREN'S HOSPITAL FOR HER CHECKUPS,AND FOR HER TEAM TO HAVE A GOOD LOOK AT TWO NEW MASSES GROWING IN HER BELLY.:(
THEY DO NOT APPEAR TO BE DANGEROUS, JUST WORRISOME, AND WILL LIKELY NEED TO BE REMOVED. WE EXPECT SURGERIES ON THURSDAY.
WE GO ON WEDNESDAY , AND OUR HOPE IS FOR SOME ANSWERS VIA MRI AND EXAMS BY HER SPECIALISTS. WE WILL ALSO TAKE X-RAYS OF HER HIPS AND LEGS SO WE CAN HAVE THE MOST EXACTING NUMBERS WE CAN FOR HER SPECIALTY ORTHOTICS TO EVEN HER LEG LENGTHS.
THANK YOU FOR JOINING HEARTS IN THANKS AND PRAYER WITH US FOR QUYNH!
Monday, January 17, 2011
BEST QUOTE OF THE NEW YEAR
FROM QUYNH
"EVERYTHING'S BROKED!"
WE STARTED THE NEW YEAR WITH ME GETTING 'PERTUSSIS' (UGH), AND THEN PASSING IT TO ONE OF MY DEAREST FRIENDS. I'M STILL COUGHING, BUT MUCH BETTER THAN I WAS. I AM SO READY TO FINISH ENDURING MY "COUGH OF A HUNDRED DAYS" AS THE CHINESE CALL IT!...BUT I HAVE ABOUT 60 MORE TO GO...SIGH
FAITHFUL WASHING MACHINE HAS BROKEN TWICE SINCE THE NEW YEAR...AND EACH TIME THE REPAIRMEN CAME FOR EXPENSIVE REPAIRS ON OUR EXTENDED WARRANTY, WE THOUGHT HE WOULD SIGH AND SAY..."SEARS SAYS GO PICK OUT A NEW ONE...THIS ONE IS SHOT". ..I WAS SURE CROSSING MY FINGERS AND TOES!
BUT AFTER HOURS OF DISMANTLING AND WORKING ON IT, HE EMERGED WITH A SMILE AND WISHED US LUCK. EEKK . IT STILLLLL DOESN'T SOUND QUITE RIGHT, SO I'M NOT SURE THE STORY IS OVER...
BUT, SO FAR, SO GOOD. AND IT AIN'T A GOOD THING HERE TO BE WITHOUT A WASHING MACHINE!
MY CAMERA HAD AN ACCIDENTAL DROP BEFORE CHRISTMAS, AND THOUGH IT TOOK SOME PRETTY GOOD SHOTS AT CHRISTMAS, I SENSED SOMETHIN' WASN'T QUITE RIGHT. AFTER ITS CHECKUP, WE FOUND IT HAS A COUPLE OF VERY TROUBLESOME ISSUES. SO, IT'S IN THE HOSPITAL BEING REPAIRED.
I AM HOPEFUL TO HAVE IT BACK BY WEEK'S END, 'CAUSE I MISS MY ACCESSORY! IT HAS BEEN A YEAR IN FEBRUARY SINCE I STARTED MY QUEST TO LEARN ABOUT PHOTOGRAPHY!
STUBBORN ME STILL HAS NOT READ THE MANUAL COVER TO COVER, BUT I HAVE TAKEN THOUSANDS OF PICTURES AND LOVE MY STYLE OF LEARNING BY DOING.
BUT THE KIDS ARE THRILLED TO HAVE A BREAK FROM HAVING THEIR PICTURES TAKEN.
I'M GOING TO TAKE SOME TIME TONIGHT TO POST SOME OF OUR YEAR'S HIGHLIGHTS IN PICTURES. I WISH I HAD TAKEN ONE OF THE WASHER IN 20 PIECES!!!
"EVERYTHING'S BROKED!"
WE STARTED THE NEW YEAR WITH ME GETTING 'PERTUSSIS' (UGH), AND THEN PASSING IT TO ONE OF MY DEAREST FRIENDS. I'M STILL COUGHING, BUT MUCH BETTER THAN I WAS. I AM SO READY TO FINISH ENDURING MY "COUGH OF A HUNDRED DAYS" AS THE CHINESE CALL IT!...BUT I HAVE ABOUT 60 MORE TO GO...SIGH
FAITHFUL WASHING MACHINE HAS BROKEN TWICE SINCE THE NEW YEAR...AND EACH TIME THE REPAIRMEN CAME FOR EXPENSIVE REPAIRS ON OUR EXTENDED WARRANTY, WE THOUGHT HE WOULD SIGH AND SAY..."SEARS SAYS GO PICK OUT A NEW ONE...THIS ONE IS SHOT". ..I WAS SURE CROSSING MY FINGERS AND TOES!
BUT AFTER HOURS OF DISMANTLING AND WORKING ON IT, HE EMERGED WITH A SMILE AND WISHED US LUCK. EEKK . IT STILLLLL DOESN'T SOUND QUITE RIGHT, SO I'M NOT SURE THE STORY IS OVER...
BUT, SO FAR, SO GOOD. AND IT AIN'T A GOOD THING HERE TO BE WITHOUT A WASHING MACHINE!
MY CAMERA HAD AN ACCIDENTAL DROP BEFORE CHRISTMAS, AND THOUGH IT TOOK SOME PRETTY GOOD SHOTS AT CHRISTMAS, I SENSED SOMETHIN' WASN'T QUITE RIGHT. AFTER ITS CHECKUP, WE FOUND IT HAS A COUPLE OF VERY TROUBLESOME ISSUES. SO, IT'S IN THE HOSPITAL BEING REPAIRED.
I AM HOPEFUL TO HAVE IT BACK BY WEEK'S END, 'CAUSE I MISS MY ACCESSORY! IT HAS BEEN A YEAR IN FEBRUARY SINCE I STARTED MY QUEST TO LEARN ABOUT PHOTOGRAPHY!
STUBBORN ME STILL HAS NOT READ THE MANUAL COVER TO COVER, BUT I HAVE TAKEN THOUSANDS OF PICTURES AND LOVE MY STYLE OF LEARNING BY DOING.
BUT THE KIDS ARE THRILLED TO HAVE A BREAK FROM HAVING THEIR PICTURES TAKEN.
I'M GOING TO TAKE SOME TIME TONIGHT TO POST SOME OF OUR YEAR'S HIGHLIGHTS IN PICTURES. I WISH I HAD TAKEN ONE OF THE WASHER IN 20 PIECES!!!
Thursday, January 6, 2011
I added some new smile wrinkles over Christmas. There was laughter and sweetness, and fussin' and making up, and memory receptors were firing...everybody was home!
My brain so wants to remember exact moments. The kids laughing all together over goofy board games, ...and peaking in on "sister talks" , knowing that was priceless time.
Making mistakes and being forgiven. Giving from the heart and hearing "that was the best ever".
Trying hard to put unconditional love in action.
I want to remember the way my littlest gals' Christmas jammies snuggled their little bodies, and the intent look on Quynh's face as she placed the ornament " just right".
The smell of my favorite coffee that the big kids snuck in and awakened early to put a pot on...just cause they love us.
Those little things that make life good and rich. Love 'em.
We were crazy busy up to the last minute. And after putting kids to sleep and several more hours of preparations, we woke up the next morning to tickles and rolled over to see two soulful eyes in the dark and a little "Merry Christmas Mommy and Daddy ...did Santa come yet?"
It wasn't perfect. We were a houseful of flawed people doing imperfect things. But, we celebrated Jesus and what He means to us, we celebrated each other, and we made memories.
And I smile as I think of them....
My brain so wants to remember exact moments. The kids laughing all together over goofy board games, ...and peaking in on "sister talks" , knowing that was priceless time.
Making mistakes and being forgiven. Giving from the heart and hearing "that was the best ever".
Trying hard to put unconditional love in action.
I want to remember the way my littlest gals' Christmas jammies snuggled their little bodies, and the intent look on Quynh's face as she placed the ornament " just right".
The smell of my favorite coffee that the big kids snuck in and awakened early to put a pot on...just cause they love us.
Those little things that make life good and rich. Love 'em.
We were crazy busy up to the last minute. And after putting kids to sleep and several more hours of preparations, we woke up the next morning to tickles and rolled over to see two soulful eyes in the dark and a little "Merry Christmas Mommy and Daddy ...did Santa come yet?"
It wasn't perfect. We were a houseful of flawed people doing imperfect things. But, we celebrated Jesus and what He means to us, we celebrated each other, and we made memories.
And I smile as I think of them....
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