Tuesday, November 8, 2011
Surgery Date is Set
May 29, 2012 is Cori's surgery date.
As we understand it, we must arrive two days early for the nuclear testing of her kidneys. A day before the surgery she will be in the hospital for the insertion of a central line and also a tube through her nose to her stomach for all the nutrition and fluids she will receive for at least 10 days after the surgery.
We have been told that the surgery is scheduled for the entire day with three surgical specialties involved. This will be a total reconstruction of her entire urogenital and bowel systems. Dr. Pena will do a Malone procedure to give her a port for her daily enema, making this port from her appendix or bowel. It is likely that Dr. Alam will make a port for a urinary catheter as well.
For a minimum of 10 days she cannot eat any foods through her mouth. We should plan to be in the hospital around 14 or so days if all goes well and plan to stay in the area for another 7 days or so.
We asked for late May because our sons will be through with their college courses, our teenagers will be through with classes as well.
On a good note, the daily enemas are going very smoothly. Cori does not complain much at all and is very happy to be clean in this way. I am also thrilled to hear her say that it no longer hurts to have her diaper changed!
This beautiful and loving little girl is such a blessing!
Saturday, October 29, 2011
Home safely. Miscellaneous Thoughts.
Cori, Jena, Lily and I arrived home last evening safely. It was so good to be back where I belong.
Today's musings: First fire of the season in our buck stove, three healthy puppies born to Libby last night, and I woke up in my own bed for the first time in 10 mornings.
Leaves cover the ground, little girls are playing with Calico Critters in the kitchen floor, college students are asleep in the basement, and there is a tree that seems to glow in the front yard where my faithful husband is working, and all seems well in the world.
It was harder to make ourselves do the daily regimen now that we are home. I know we had hoped it would be temporary. The surgery should be sometime in last May or early June.
A yahoo group "friend" and passionate adoption advocate posted this comment today. I thought it was worth repeating: "I've learned to be content with such things as I have. I do not make a fabulous salary, drive the expensive vehicles.
Life isn't perfect and I'm not looking for perfect children. I'm looking
for those who will widen my heart, challenge my mind and polish my soul."....Tim Stowell.
Yes another great quote from our former pediatrician who is now a missionary:
" I tend to see the stack of possibilities as a mountain of obligation, lean the yardstick of expectation against it, stand on the step stool of my own resources, and stick the thumb of despair in my mouth!
Pray for the humility to say no and the courage to say yes and for passion and creativity and for us to live as finite creatures that believe in and worship a generous God with a big mission, infinite resources, and impeccable timing. In short, pray for us to live with little presumption but growing faith! " Joel Hylton.
What is left to say?
Today's musings: First fire of the season in our buck stove, three healthy puppies born to Libby last night, and I woke up in my own bed for the first time in 10 mornings.
Leaves cover the ground, little girls are playing with Calico Critters in the kitchen floor, college students are asleep in the basement, and there is a tree that seems to glow in the front yard where my faithful husband is working, and all seems well in the world.
It was harder to make ourselves do the daily regimen now that we are home. I know we had hoped it would be temporary. The surgery should be sometime in last May or early June.
A yahoo group "friend" and passionate adoption advocate posted this comment today. I thought it was worth repeating: "I've learned to be content with such things as I have. I do not make a fabulous salary, drive the expensive vehicles.
Life isn't perfect and I'm not looking for perfect children. I'm looking
for those who will widen my heart, challenge my mind and polish my soul."....Tim Stowell.
Yes another great quote from our former pediatrician who is now a missionary:
" I tend to see the stack of possibilities as a mountain of obligation, lean the yardstick of expectation against it, stand on the step stool of my own resources, and stick the thumb of despair in my mouth!
Pray for the humility to say no and the courage to say yes and for passion and creativity and for us to live as finite creatures that believe in and worship a generous God with a big mission, infinite resources, and impeccable timing. In short, pray for us to live with little presumption but growing faith! " Joel Hylton.
What is left to say?
Monday, October 24, 2011
Clear X Ray
My first day of administering the enema without a helper. It was quite the comedy to see me attach the bag to the sprinkler system so it would be high enough to flow....then it fell of, of course. Now I have a Command hook on the wall for tomorrow.
We then went to the hospital for the colon xray, had lunch, came back to the room for school work and a nap. The nurse called to say the xray was clear!
Dinner in the room, shopping for a dinner tray for Cori to use as a table when she is having to sit on the potty.
This HAS to be the worse Wal Mart I have ever encountered. Asked in the sporting goods department, since they have life vests for adults, if the have them for children so Cori can be safe in the hotel pool. "Weeeelllll, ( I did not know rednecks strayed this far from North Carolina_, we probably ain't got any unless they are in them there sections up at them registers, or maybe you could go to the garden center to see if they have any of them left."
Guess what is in the garden center, folks? Christmas trees!
So I go back to toys and they send me to the front and the lady at the front says, "Weeelll, you see, this is a seasonal store and those things are way out of season, so you aren't going to find any here."
Last night I asked the pharmacy if they have glycerin. After he had taken me to three different sections he announces, "Weeelll, I don't think we ever had any of that stuff."
Tonight I asked if they had any leggings Lily's size. "Weeelll, they are in the hosiery." No, they aren't. So she calls and calls on her walkie talkie and asks.
"Weelll, those are seasonal and we are out of them now." REALLY" Leggings? Aren't those to keep a child's legs warm? Isn't it fall?
"Well, yes, but right now we have these little short skirts."
Someone, please, put me out of my misery!
We got back to the room with a bunch of other stuff, but no tray. I could swear I put it in the cart! One of the things I bought was a timer because all the times have to be exact. Just opened it.....no battery.
Arrrrggghhhh! Can I find the resignation office? I was to quit.
But, the girls are happy they ended with some fun indoor swimming with three little girls from China. Then off to warm baths, and the goal is bed soon.
The day has gone very slowly without Wes. But, only 4 more to go!
We then went to the hospital for the colon xray, had lunch, came back to the room for school work and a nap. The nurse called to say the xray was clear!
Dinner in the room, shopping for a dinner tray for Cori to use as a table when she is having to sit on the potty.
This HAS to be the worse Wal Mart I have ever encountered. Asked in the sporting goods department, since they have life vests for adults, if the have them for children so Cori can be safe in the hotel pool. "Weeeelllll, ( I did not know rednecks strayed this far from North Carolina_, we probably ain't got any unless they are in them there sections up at them registers, or maybe you could go to the garden center to see if they have any of them left."
Guess what is in the garden center, folks? Christmas trees!
So I go back to toys and they send me to the front and the lady at the front says, "Weeelll, you see, this is a seasonal store and those things are way out of season, so you aren't going to find any here."
Last night I asked the pharmacy if they have glycerin. After he had taken me to three different sections he announces, "Weeelll, I don't think we ever had any of that stuff."
Tonight I asked if they had any leggings Lily's size. "Weeelll, they are in the hosiery." No, they aren't. So she calls and calls on her walkie talkie and asks.
"Weelll, those are seasonal and we are out of them now." REALLY" Leggings? Aren't those to keep a child's legs warm? Isn't it fall?
"Well, yes, but right now we have these little short skirts."
Someone, please, put me out of my misery!
We got back to the room with a bunch of other stuff, but no tray. I could swear I put it in the cart! One of the things I bought was a timer because all the times have to be exact. Just opened it.....no battery.
Arrrrggghhhh! Can I find the resignation office? I was to quit.
But, the girls are happy they ended with some fun indoor swimming with three little girls from China. Then off to warm baths, and the goal is bed soon.
The day has gone very slowly without Wes. But, only 4 more to go!
Sunday, October 23, 2011
Sunday
We began by watching our awesome church service on-line. Pastor stepped on my feet. Two quotes stand out:"You are as deep theologically as the last person you served. Rough quote: If there is a relationship problem it is probably about you thinking about yourself.
Ouch!
So, after that we did Cori's procedure. A couple of hitches, but she is so willing to do this. All day long as we deal with her diaper she announces: "No poo poo. You happy?" I kept asking her back, "Are you happy?"
"Yes!"
Then we took off with our tired legs and feet to visit the Newport/Cincinnati Aquarium. AWESOME! I would really love to get a lawn chair and sit for hours staring up into the tubes of the most gorgeous and glorious underwater tubes full of God's inventive creation. By biggest laughs were at the shark who seems to have a ray on its head. Guess what man names it......A ray shark. Laughed so hard! Also love the upside down catfish and jellyfish.
When we went to touch the shark Lily asked if it was friendly. Right before she stuck her hand in she asked, " Is it real real friendly?"
The jellyfish exhibit with colored lights and classical music playing was another spot I would just love to camp out in for a couple of hours.
River otter, penguins, myriad frogs, huge silver schooling sturgeon....I was blown away by the handiwork of God.
Wes took off then for home. Not my favorite moment. We rested and then hit the indoor pool. I know this will give most of you nightmares, but this old chunk momma worked on teaching her girls to dive and do the backstroke. Don't worry. There were no other witnesses.
An angel named Elizabeth visited with me for awhile. She has three from China, almost the identical ages of our girls. She is at the hospital, too. She loves the Lord and prayed with me this morning. She is a Godsend.
Thank you for your prayers and offers of help. We have no idea how to handle the 14 - 20 days with Cori here for her next surgery. Do any of you want to adopt us?
Saturday, October 22, 2011
The day it sinks in...
It was SO wonderful to have Wes, Jena, and Lily come up last night. We had a great dinner to celebrate Lily's 8th birthday then back to the room for presents. Cori had really missed her dad and sisters. She asks about Katherine and Grace every day as well.
This morning was the first enema and she was great. Her nose bled throughout and that worries us, but everything worked as it should have and she was an excellent sport. I don't know how I will do it without an extra set of hands when Wes goes back home tomorrow, but people do it every day and I know God will equip me.
Then we had a wonderful day at the Cincinnati Zoo. What a gorgeous, sunny, perfect fall day! The exhibits are absolutely stellar. There were moments we felt God has just put us in the right place at the right time to see something simply amazing. The highlights of our day were seeing the manatees, the baby chimp playing with his mom, the leaf cutter ants. Lily's favorite part was the giraffe. Cori liked petting the sheep. No one liked the spiders or snakes. All the worries of the past week were on the back burner.
Back to the room for some well deserved rest, but it did not last long. Katherine called to say she and Grace had rear ended a truck. They are ok physically, but really battered emotionally. And there was nothing we could do to fix it. It was not wise for Wes to begin an over 6 hour trip home after 6 pm. So, I lost it. I cannot take care of my kids here and my kids there. Why can't this solution be closer to home?
Then we went to dinner and began to discuss how to manage a 14 to 21 day stay in Cincinnati for Cori's next surgery. Wes cannot be here more than a few days. Jena and Lily cannot come with us if Cori is in the hospital for 14 days. So I lost it in O'Charleys.
And this next 6 months will also include a surgery for Jena in November to reconstruct her nose and lip, and the bone grafting from Lily's hip into her palate.
Sorry that this sounds like a pity party. A wise woman who handles far more than this on a daily basis warned against it in us and in the child. I am just using the blog to vent a little and so that those of you who are praying for us can know better how to call out the the Father for us.
I sign off with three little munchkins in their beds, too excited to sleep but soon to run out of gas, a strong and loving husband/daddy in the next room watching football, and a host of friends I have and have not met who read this and care.
It gives me more comfort than you can ever know.
Thank you,
Stephanie
Friday, October 21, 2011
Overwhelmed...
The results are in. We have some pieces of good news. We have some pieces of hard news. and We have some bad news.
The good news: We got a great report from the gynecologist. She will need to have c-sections, but she should, with one more possible surgery, be able to have normal intimacy with her husband and conceive children.
Other good news: Their is a urologist in Charlotte who maintains a really good relationship with the one here in Cincinnati. And their is an awesome colorectal doctor in Asheville who used to work here until 2 years ago and has a great relationship with this team as well.
The hard news, part 1: Her bowel management regimen takes 15 minutes a day to administer and 45 minutes of potty time before it is complete. That is every day without fail, with the exact measures and at the same time everyday. And it is not all that easy to administer, so it will have to be Wes and me. We pray God will show us someone who could fill in for us for a long weekend on occasion. It is an effective treatment for complete bowel cleanness in 95% of cases. We would come back in a year for another week of bowel management that might progress to laxatives or require continued daily enemas for another year. They might, two years or so from now, form a belly button port for enemas. There are 30 years of experience to tell this world renowned doctor some indicators that bowel continence can eventually be achieved without daily enemas. Cori is currently considered a good candidate.
Hard news, part 2: We are not near to a solution for the urine. She should have reconstructive surgery for all three systems in the next 6 months or so. It is possible that the reconstruction may return urinary continence. If not, at the same time she might need to belly button port for enemas they would form an abdominal port for urinary cateterizing every 3 to 4 hours.
Her horrible rash should get better without bowel matter involved and we have a new cream that has helped greatly. They have a homemade solution that is less expensive I should hear about soon.
Bad News: The first repair surgery will be in Cincinnati and will require around 14 or more days in the hospital and additional days in the area. She will go 10 days with only fluids through a tube in her nose. Then they will gradually add back fluids by mouth, eventually soft food, etc until she is passing normal stool. During this time she will likely need bladder cathing through her private parts. She will go for a month without enemas but resume that daily regimen.
The worst news: She has reflux or urine back to the kidneys and has already suffered kidney damage. Any fever with vomiting is to be treated as a bladder infection with immediate attention to prevent further and worse damage. The since she is emptying her bladder the most likely explanation is a malformation of the bladder. She needs a nuclear medicine type test in the future for more specific information about her kidneys.
Twice today and nurse stayed in the room and asked me how I was handling the information. Not well. Wes has been chewing on it for about an hour and he is very over whelmed.
Wes, birthday girl Lily, and Jena are speeding towards us even now. We will go to the zoo and the aquarium this weekend. Wes will drive back for work and for Katherine and Grace while us girls do the daily enema and trip to the hospital for the xray.
As you can imagine, Cori and her dazed parents need your prayers.
The good news: We got a great report from the gynecologist. She will need to have c-sections, but she should, with one more possible surgery, be able to have normal intimacy with her husband and conceive children.
Other good news: Their is a urologist in Charlotte who maintains a really good relationship with the one here in Cincinnati. And their is an awesome colorectal doctor in Asheville who used to work here until 2 years ago and has a great relationship with this team as well.
The hard news, part 1: Her bowel management regimen takes 15 minutes a day to administer and 45 minutes of potty time before it is complete. That is every day without fail, with the exact measures and at the same time everyday. And it is not all that easy to administer, so it will have to be Wes and me. We pray God will show us someone who could fill in for us for a long weekend on occasion. It is an effective treatment for complete bowel cleanness in 95% of cases. We would come back in a year for another week of bowel management that might progress to laxatives or require continued daily enemas for another year. They might, two years or so from now, form a belly button port for enemas. There are 30 years of experience to tell this world renowned doctor some indicators that bowel continence can eventually be achieved without daily enemas. Cori is currently considered a good candidate.
Hard news, part 2: We are not near to a solution for the urine. She should have reconstructive surgery for all three systems in the next 6 months or so. It is possible that the reconstruction may return urinary continence. If not, at the same time she might need to belly button port for enemas they would form an abdominal port for urinary cateterizing every 3 to 4 hours.
Her horrible rash should get better without bowel matter involved and we have a new cream that has helped greatly. They have a homemade solution that is less expensive I should hear about soon.
Bad News: The first repair surgery will be in Cincinnati and will require around 14 or more days in the hospital and additional days in the area. She will go 10 days with only fluids through a tube in her nose. Then they will gradually add back fluids by mouth, eventually soft food, etc until she is passing normal stool. During this time she will likely need bladder cathing through her private parts. She will go for a month without enemas but resume that daily regimen.
The worst news: She has reflux or urine back to the kidneys and has already suffered kidney damage. Any fever with vomiting is to be treated as a bladder infection with immediate attention to prevent further and worse damage. The since she is emptying her bladder the most likely explanation is a malformation of the bladder. She needs a nuclear medicine type test in the future for more specific information about her kidneys.
Twice today and nurse stayed in the room and asked me how I was handling the information. Not well. Wes has been chewing on it for about an hour and he is very over whelmed.
Wes, birthday girl Lily, and Jena are speeding towards us even now. We will go to the zoo and the aquarium this weekend. Wes will drive back for work and for Katherine and Grace while us girls do the daily enema and trip to the hospital for the xray.
As you can imagine, Cori and her dazed parents need your prayers.
Thursday, October 20, 2011
Sedated procedures today
Hospital no later than 6 am means up by 5 am, but I woke up around 3 and could not go back to sleep. Yawn...
We met the urologist, Dr. Alam, before the procedure. Yesterday's test showed that she has urine reflux. On a scale of 1 to 5 her left ureter is a level 3. This could do damage to her kidneys. We will hear his plan based on today's scoping and the tests tomorrow.
She was a trooper about having to go without food or drink this morning. By the time we had met our 20th or so staff member and signed enough papers to refinance our house, she was not quite as friendly. She got the giggles when the mask had been on her face for a little while. She was still trying to draw on my Nook. It turned into a purple blob and then she was out.
I headed out for comfort food....scrambled eggs, bacon, and the Chinese White Swan breakfast buffet favorite.............tater tots. OK, so I know it was bad for me, but it was SO good.
After less that 30 minutes I was called to meet with 2/3rds of the team, Dr. Pena and Dr Cocker. It is very reassuring to talk to Dr. Pena. He did cloaca repair in 1982. This team at Cincinnati Children's has seen almost 600 cloaca patients, over 100 of those adopted from China. He knew all of my concerns and has handled them all. I know we are at the right place! I know we will get a workable and hopeful plan tomorrow.
As has been the case before, our spicy Hunan girl wakes up with a hot anger! The nurse said she took out the IV so Cori would not rip it out herself. Unlike last year's reaction, however, she now knows I am her Momma, so she was soothed by my singing and was soon ready to leave.
Early food is supposed to be clear liquids and crackers..........Does she sound like the type of child who would settle for that??? Try yogurt, cheese stick, frosted flakes, and apples dippers.
It is very cold and rainy, but Dora episodes are getting old. We might have to venture out just to insure our sanity.
Thank you for your prayers and notes!
We met the urologist, Dr. Alam, before the procedure. Yesterday's test showed that she has urine reflux. On a scale of 1 to 5 her left ureter is a level 3. This could do damage to her kidneys. We will hear his plan based on today's scoping and the tests tomorrow.
She was a trooper about having to go without food or drink this morning. By the time we had met our 20th or so staff member and signed enough papers to refinance our house, she was not quite as friendly. She got the giggles when the mask had been on her face for a little while. She was still trying to draw on my Nook. It turned into a purple blob and then she was out.
I headed out for comfort food....scrambled eggs, bacon, and the Chinese White Swan breakfast buffet favorite.............tater tots. OK, so I know it was bad for me, but it was SO good.
After less that 30 minutes I was called to meet with 2/3rds of the team, Dr. Pena and Dr Cocker. It is very reassuring to talk to Dr. Pena. He did cloaca repair in 1982. This team at Cincinnati Children's has seen almost 600 cloaca patients, over 100 of those adopted from China. He knew all of my concerns and has handled them all. I know we are at the right place! I know we will get a workable and hopeful plan tomorrow.
As has been the case before, our spicy Hunan girl wakes up with a hot anger! The nurse said she took out the IV so Cori would not rip it out herself. Unlike last year's reaction, however, she now knows I am her Momma, so she was soothed by my singing and was soon ready to leave.
Early food is supposed to be clear liquids and crackers..........Does she sound like the type of child who would settle for that??? Try yogurt, cheese stick, frosted flakes, and apples dippers.
It is very cold and rainy, but Dora episodes are getting old. We might have to venture out just to insure our sanity.
Thank you for your prayers and notes!
Wednesday, October 19, 2011
First Day at Cincinnati Children's Hospital
With 11,000 employees it certainly is a busy place, but we were impressed with everyone we saw. It is so precious to see so many "special" employees working there.
Our day arrived cold and rainy, with car choked highways, a maze of a parking deck, and a broken stroller. (Thank you for the use of some heavy duty tape, urology department!)
Our first stop was for a Urology Formal Urodynamics study. They placed EMG patches on her connected to wires, had a catheter inserted for and aft (read through the lines), then her bladder was filled with fluid. All of that was emptied and she had an ultrasound.
Off to blood draw in the lab. Lunch, then to Radiology for an extensive abdominal ultrasound. Then she had her longest and hardest procedure. First was a voiding cystogram, a test to take pictures of the urinary system. Once again she had a catheter that filled her up, this time far past her comfort level. She cried quite a bit but settled down once she was able to void. She had many many x-rays at this point. Then she had an enema administered with the same results.....pain and more xrays. She was very uncomfortable at this point.
Finally she was allowed to potty ...and potty...and potty....and, well you get the idea. At least she was watching Cinderella. She is as clean as Cinderella's floor, if you get my drift.
She was asleep in less than 4 minutes in the car and then took a nap while Mommie did the same late afternoon.
She cries during these painful procedures, but she recovers quickly and responds to the toys and all they are showing to distract her. She has been through so much and has much more to go, but she is SO precious and tires so hard to be strong.
The trip up yesterday was beautiful. I could tell many of you were praying for me since my back and jaw really did well.
Tomorrow we are up at 5 am to be at the hospital by 6 for pre op. The Exam under anesthesia, Cystoscopy, and Vaginoscopy are scheduled for 7:30. I do not know how long everything will take, but we have nothing else tomorrow.
We appreciate your prayers for this brave and beautiful child.
Our day arrived cold and rainy, with car choked highways, a maze of a parking deck, and a broken stroller. (Thank you for the use of some heavy duty tape, urology department!)
Our first stop was for a Urology Formal Urodynamics study. They placed EMG patches on her connected to wires, had a catheter inserted for and aft (read through the lines), then her bladder was filled with fluid. All of that was emptied and she had an ultrasound.
Off to blood draw in the lab. Lunch, then to Radiology for an extensive abdominal ultrasound. Then she had her longest and hardest procedure. First was a voiding cystogram, a test to take pictures of the urinary system. Once again she had a catheter that filled her up, this time far past her comfort level. She cried quite a bit but settled down once she was able to void. She had many many x-rays at this point. Then she had an enema administered with the same results.....pain and more xrays. She was very uncomfortable at this point.
Finally she was allowed to potty ...and potty...and potty....and, well you get the idea. At least she was watching Cinderella. She is as clean as Cinderella's floor, if you get my drift.
She was asleep in less than 4 minutes in the car and then took a nap while Mommie did the same late afternoon.
She cries during these painful procedures, but she recovers quickly and responds to the toys and all they are showing to distract her. She has been through so much and has much more to go, but she is SO precious and tires so hard to be strong.
The trip up yesterday was beautiful. I could tell many of you were praying for me since my back and jaw really did well.
Tomorrow we are up at 5 am to be at the hospital by 6 for pre op. The Exam under anesthesia, Cystoscopy, and Vaginoscopy are scheduled for 7:30. I do not know how long everything will take, but we have nothing else tomorrow.
We appreciate your prayers for this brave and beautiful child.
First Day at Cincinnati Children's Hospital
With 11,000 employees it certainly is a busy place, but we were impressed with everyone we saw. It is so precious to see so many "special" employees working there.
Our day arrived cold and rainy, with car choked highways, a maze of a parking deck, and a broken stroller. (Thank you for the use of some heavy duty tape, urology department!)
Our first stop was for a Urology Formal Urodynamics study. They placed EMG patches on her connected to wires, had a catheter inserted for and aft (read through the lines), then her bladder was filled with fluid. All of that was emptied and she had an ultrasound.
Off to blood draw in the lab. Lunch, then to Radiology for an extensive abdominal ultrasound. Then she had her longest and hardest procedure. First was a voiding cystogram, a test to take pictures of the urinary system. Once again she had a catheter that filled her up, this time far past her comfort level. She cried quite a bit but settled down once she was able to void. She had many many x-rays at this point. Then she had an enema administered with the same results.....pain and more xrays. She was very uncomfortable at this point.
Finally she was allowed to potty ...and potty...and potty....and, well you get the idea. At least she was watching Cinderella. She is as clean as Cinderella's floor, if you get my drift.
She was asleep in less than 4 minutes in the car and then took a nap while Mommie did the same late afternoon.
She cries during these painful procedures, but she recovers quickly and responds to the toys and all they are showing to distract her. She has been through so much and has much more to go, but she is SO precious and tires so hard to be strong.
The trip up yesterday was beautiful. I could tell many of you were praying for me since my back and jaw really did well.
Tomorrow we are up at 5 am to be at the hospital by 6 for pre op. The Exam under anesthesia, Cystoscopy, and Vaginoscopy are scheduled for 7:30. I do not know how long everything will take, but we have nothing else tomorrow.
We appreciate your prayers for this brave and beautiful child.
Our day arrived cold and rainy, with car choked highways, a maze of a parking deck, and a broken stroller. (Thank you for the use of some heavy duty tape, urology department!)
Our first stop was for a Urology Formal Urodynamics study. They placed EMG patches on her connected to wires, had a catheter inserted for and aft (read through the lines), then her bladder was filled with fluid. All of that was emptied and she had an ultrasound.
Off to blood draw in the lab. Lunch, then to Radiology for an extensive abdominal ultrasound. Then she had her longest and hardest procedure. First was a voiding cystogram, a test to take pictures of the urinary system. Once again she had a catheter that filled her up, this time far past her comfort level. She cried quite a bit but settled down once she was able to void. She had many many x-rays at this point. Then she had an enema administered with the same results.....pain and more xrays. She was very uncomfortable at this point.
Finally she was allowed to potty ...and potty...and potty....and, well you get the idea. At least she was watching Cinderella. She is as clean as Cinderella's floor, if you get my drift.
She was asleep in less than 4 minutes in the car and then took a nap while Mommie did the same late afternoon.
She cries during these painful procedures, but she recovers quickly and responds to the toys and all they are showing to distract her. She has been through so much and has much more to go, but she is SO precious and tires so hard to be strong.
The trip up yesterday was beautiful. I could tell many of you were praying for me since my back and jaw really did well.
Tomorrow we are up at 5 am to be at the hospital by 6 for pre op. The Exam under anesthesia, Cystoscopy, and Vaginoscopy are scheduled for 7:30. I do not know how long everything will take, but we have nothing else tomorrow.
We appreciate your prayers for this brave and beautiful child.
Monday, October 17, 2011
No room's available at the Ronald McDonald House
Sunday, October 16, 2011
Off to Ohio in about 36 hours.
Six hours to drive up on Tuesday. Wednesday is a gauntlet of painful and invasive procedures that go on all day. Tubes, needles, dyes, catheters, no time for naps or food. This much fluid, no food, no milk, full bladder......are you kidding. Thursday is a 7 am arrival. No food or drink past midnight. Sedated scoping. Friday is 6 hour ordeal. If I was still 25 I know I would need God to sustain. And Cori is just a baby. There is so little of this she can comprehend.
Almost everyday she asks about her huge abdominal scar. Every day she cries for every single diaper change. She knows we are going alone to see doctors who can help.
I am not ashamed that she is ours and we are old people. But I have to fall on God's mercy and His clear voice that this child is ours......And He who began a good work in me will be faithful to complete it.
He will thoroughly equip me for every good work.
And then there is the majority family back in NC. Two kids all wrapped up in high school activities. Two severely speech delayed and abandoned little girls, and two sensitive dachshunds who will deliver while I am gone and provide so much essential income to our family.
No news yet from the Ronald McDonald house.
Hearing this precious baby calling out in fear from her bed. Gotta go.
By the way, we would not have it any other way than this passionate and painful reliance on God.
Almost everyday she asks about her huge abdominal scar. Every day she cries for every single diaper change. She knows we are going alone to see doctors who can help.
I am not ashamed that she is ours and we are old people. But I have to fall on God's mercy and His clear voice that this child is ours......And He who began a good work in me will be faithful to complete it.
He will thoroughly equip me for every good work.
And then there is the majority family back in NC. Two kids all wrapped up in high school activities. Two severely speech delayed and abandoned little girls, and two sensitive dachshunds who will deliver while I am gone and provide so much essential income to our family.
No news yet from the Ronald McDonald house.
Hearing this precious baby calling out in fear from her bed. Gotta go.
By the way, we would not have it any other way than this passionate and painful reliance on God.
Sunday, October 9, 2011
Our October countdown begins
Cori and I will drive to Ohio on the 18th of this month. I am a little overwhelmed by the testing she will have to endure in the first 72 hours of her visit. Some of the preparation is simply impossible. There is no way to insure a full bladder for an incontinent child.
As I change her diaper every day she cries her heart out and calls out to her "Momma". I have told her we are going to a doctor who will fix her so she will not be raw and wet anymore, but I have no reason to believe this visit will include that surgery. We have adoption internet friends whose son has already had these same procedures and tests but they have to wait until March for the surgery. I just cannot imagine waiting that much longer.
As to the rest of Cori, Oh, how glorious and precious she is!She had a photo shoot for the Just Ducky catalog on Thursday and she was a total hit. She punched the photographer in the arm and told him he was a boy, as if that was the worst thing she could say. Now she has announced that no boys can come to her birthday party.....in May!
Friday night, while kissing me before bed, she said I was the best momma. She asked me last week, "You my Momma. You Happy?"
Oh yes, baby girl. I am delirious with happiness. Full to over flowing.
As I change her diaper every day she cries her heart out and calls out to her "Momma". I have told her we are going to a doctor who will fix her so she will not be raw and wet anymore, but I have no reason to believe this visit will include that surgery. We have adoption internet friends whose son has already had these same procedures and tests but they have to wait until March for the surgery. I just cannot imagine waiting that much longer.
As to the rest of Cori, Oh, how glorious and precious she is!She had a photo shoot for the Just Ducky catalog on Thursday and she was a total hit. She punched the photographer in the arm and told him he was a boy, as if that was the worst thing she could say. Now she has announced that no boys can come to her birthday party.....in May!
Friday night, while kissing me before bed, she said I was the best momma. She asked me last week, "You my Momma. You Happy?"
Oh yes, baby girl. I am delirious with happiness. Full to over flowing.
Monday, September 26, 2011
Please vote for Cori
Sunday, September 18, 2011
Sleep and adoption
I was one of the moms all the other moms hated. My bio kids, without fail, slept through the night 6 weeks after their due date.
But adopted children present an entirely different case. You may know your bio chid is well fed, has a dry diaper, and is warm in their covers. ( one exception.....our child with night terrors.) But when your adopted child is crying in the night, you have no idea what memory, abuse, neglect, or fear is causing it. You ask what hurts, but is is most likely a place in the heart only God can heal.
Cori can look like a child star all day long, but she is still totally undone many many nights. Lily and Jena still deal with these unspoken fears many years after they have been safe, warm, loved, pampered, fed, and adored.
It is possible that it is never over for abandoned and rejected children this side of heaven.
But we do ask you to pray that God will use us until we are empty to make a way to joy for them.
But adopted children present an entirely different case. You may know your bio chid is well fed, has a dry diaper, and is warm in their covers. ( one exception.....our child with night terrors.) But when your adopted child is crying in the night, you have no idea what memory, abuse, neglect, or fear is causing it. You ask what hurts, but is is most likely a place in the heart only God can heal.
Cori can look like a child star all day long, but she is still totally undone many many nights. Lily and Jena still deal with these unspoken fears many years after they have been safe, warm, loved, pampered, fed, and adored.
It is possible that it is never over for abandoned and rejected children this side of heaven.
But we do ask you to pray that God will use us until we are empty to make a way to joy for them.
Wednesday, August 24, 2011
Gotcha Day!
It was an emotional weekend as we were counting down to the first anniversary of meeting Cori in China. I started sending out emails days in advance and would really tear up with joy. I read my journal entry from that day, remembering how she punched the doll in the face and threw the poodle and quilt on the floor. I remembered how she got as far from us as possible for as long as possible. She was so much smaller than we expected, dressed in pigtails and baby chick yellow, her cheeks bulging out with candy.
And now to see her 7 pounds heavier, 3 inches taller, and still being treated to a daily dose of, "Mine. My Mommy, " to which she has added "Love you, Momma."
How could it be any better??
Well, today it did get better in an interesting and unexpected way. Some of you know that I have bred AKC dachshunds for 26 years. Once a female has had a few litters for us we find her a pet home to retire to. I decided to retire a female that had given us gorgeous puppies that always sold quickly. Wes did not want to retire her yet, but I thought she needed a break and deserved to be a pampered pet. A couple adopted her
this February and has given me updates about her adjustment on occasion.
They sent an email today with this line, "After, we visited with you in February and saw the three children that
you had adopted, my husband and I decided to become foster parents in the hopes
of adopting also. "
That just blows me away. Thank you, God, for impacting another child/children through our little dachshund business!!
Thursday, August 11, 2011
Home.
I love to share the ways that Cori is blessing our lives and teaching us about love. As you can see, one of her new loves is corn in the cob. Last night was here first taste and she was hooked.
She is also loving the time she is with her oldest sister and brother-in-law as they visit us from Brooklyn. She is talking and giggling up a storm.
Her newest saying that really humbles us: "Cori, where are we?"
"Home".
"Whose home, Cori"
Her precious answer, "Us home!"
Yes, gorgeous. It is "us" home, and you make "us" much more than we were just 10 1/2 months ago. "Us" are so grateful that you are home!
Monday, July 25, 2011
Cincinnati Children" itinerary has arrived
Arrive in Ohio on October 18. On October 19th she will have the urodynamics study, kidney ultrasound, cystogram, and contrast enema. October 20th she will be sedated for the onternal scope exam by gastro team, gynecology team, and urology team. October 21st will have a training session for me to administer the enemas, then meetings with all three specialists to discuss their findings so far. That night Cori will have her first enema. Saturday and Sunday I will keep a journal of how they go each day. Monday through Thursday she will have a xray of her bowel everyday while I give the enemas each night. Friday I will again take her for an xray and then meet with the entire team again to discuss her needs.
Right now the plan is that Cori and I will go up by ourselves. Wes and the girls will come up for the weekend and some sight seeing. He will return with Katherine and Grace, leaving Jena, Lily, and Cori with me. I will take her in for her xray each day and do school with Jena and Lily.
This is a lot for such a little girl to endure in such a short amount of time. Please pray for her tolerance and the sensitivity of the medical team.
Friday, July 22, 2011
It has been 11 months since this ray of sunshine came into our lives!
I cannot even believe it. I was at Target tonight and I remembered that I was in that same parking lot a year ago when our agency called to see if we could travel to China in August.
Now it all seems like only an instant has passed......I cannot stand to be away from her for very long and cannot wait to get my hands on her when I come home! Leaving for 4 days this week was very hard. Tonight we came home to her so asleep that she was wet with sweat....I kissed her face off!
Wednesday, July 13, 2011
Friday, July 1, 2011
We have a date.
Cori's sedated exam is scheduled for October 20th. The other procedures will revolve around this date.
Thursday, June 30, 2011
Conundrum
Conundrum. What is this? Well, my brother-in-law ordered it the only time we ever went out as two couples. Easy answer....really nice table wine. Harder...a decision with more than two possible answers. My conundrum. And that of all moms. How to hold on loosely to your children.....especially to your older ones, while wanting to cling to them. How to breathe your children into your heart... only to tell them to fly away. How to trust God with them when they have taken another path..
A baby I got to care for at VBS was close to a clone of my daughter, Jessica, born over 25 years ago. It reminded me of the days I could hold her forever, breathe her in, kiss her cheeks.
Cori could not stop touching me today. She ran after me in the garage to tell me she loved me. By about 9 pm, with no hubby at home, I was over the physical contact. I now know that it was because I had Red Hots.....But how could I push her away when I know how quickly that will happen naturally?
The hospital in Ohio has given us a plan. No dates, just a plan. X rays of sacrum because that indicates the future of bowel continence, films of renal system, voiding cystogram, contrast enema, sedated exam by three specialties, urodynamics study with electrodes, blood work, gynecology attending sedated exam and meeting in clinic, 5 day bowel management study beginning with a 2 hours lecture followed by an abdominal x-ray, clinic with all three specialists, then a recommendations for her enema routine. Then we go to the hotel or Ronald McDonald house to do three days of the enemas while I record our results. Monday we report for the results and another x-ray and clinic. If they say surgery is needed we might be offered the opportunity to do it then.
It will be me and Cori for these 8 days plus travel. My precious husband cannot leave work and the other children for that long.
My personal conviction is that Cori will be successful with enemas but will need the urinary surgery. So, the prayer requests might be....."Grant complete insurance approval....grant federal approval status....make a way for all to be done at that visit.....mae it all as simple as possible, but equip for every possibility and grant grace to all!!! Show the glory of God in everything. Take great and precious care of all who remain in Fairview. You amde Jiang Yi Hua, Corin Malia Wright. You knit her together in her mother's womb She is fearfully and wonderfully made. You know the plans you have for her, plans to prosper her, not to harm her, to give her a future and a hope. Fulfill this great word for her!"
Tuesday, June 14, 2011
This time last year my biggest concern was getting to Cori. I was sewing these matching dresses as therapy to survive the months when I thought we would already have had her in our arms. Now I know God's timing is perfect. But now I know that even US pediatricians and endocrinologists have never seen her condition! So many people say, "Bless you for what you have taken on." We were clueless! So were the Chinese doctors and the first two US professionals! Do you really want to know in advance the trials and tests that will come your way?
We would have missed all of these precious faces if we had known all God knew.
Only two specialists in Cincinnati have seen her file and they want 8 days for diagnostics alone. If we had gone with the local urologist plan then we would lose the option of a bowel plan in the future.
In the final analysis, this is just a child. A brilliant and beautiful child, who was abandoned the days she was born. She needs some surgery. It is serious surgery. There is no "normal" for our children. You know what, I am not normal!!!! I am crippled, as Dr. Jim Henry so beautifully articulated this Sunday. It is easier to overlook the mental and spiritual and emotional wheelchairs we all ride in......but I have the unique blessing of being reminded every single day that I am not equipped . I offer nothing. I have nothing. And if I do not seek the throne of grace, then I am road kill. I have not one single second of personal victory. And yet I praise God! If I was adequate in any single way of my own self, I would not have to fall on my face before HIS throne. I am a goner. I am a failure. I offer nothing.
But I am so completely grateful that that condition throws me to the altar. It is my most earnest cry that all that I love find themselves unable to walk another day without the presence and Grace of God most high.
Thursday, June 9, 2011
Very very discouraging news today
We had hoped this massively talented and well trained guy who makes presentations to the best and brightest would be able to handle Cori locally. Not so. And he was realistic about her lifetime prognosis, I had to come home and go to bed. So, here we are. It took 15 months to get Cori out of China. It has taken 9 months for the locals to admit they are above their pay grade. And it will take about two weeks for the best and brightest to say what she needs....but we are also told she will never be normal. Never. Jena's mouth will never work right. She will never hear right. Lily may never overcome living in a police station, an orphanage, a hospital, a foster home, and then with us. But this day Cori's daddy held her and showed her the toys. He colored with her. He asked her if she was Daddy's girl, and while she colored his pictures and kissed him on the cheek, she said, " No, I am Mommy's girl." Again tonight, she woke us up in torture for her bottom is raw with urine. And all of our eyes are full of tears.
Saturday, May 28, 2011
Oh, happy birthday. You are here with us for this one!
Cori's birthday was May 26. Two years ago on that date, Holt Adoption Agency interviewed us for 90 minutes on a conference call about selecting our family to adopt Cori. We got off the phone and said either they loved us or hated us. We had picked out new countertops for the kitchen in the event they said no. Two days later, on our 26th wedding anniversary, Holt called to say yes! We laughed about the countertops.
Last year on May 26, I cried. I had wanted to have her in my arms by then. We were able to send her a cake and two days later, on our 27th wedding anniversary, we got to see those pictures. They were like water in the desert.
This year, she is ours.
Wes joked last year that the $90 it took to send her a cake and the $35 we paid for the pictures was still cheaper than Chuckie Cheese. Guess where we took her this year?
The grandmothers hated it, of course. But Wes's mother just kept saying how completely adorable she is. (His mom has gotten more and more beautiful every one of her 75 years.)
We showed Cori the pictures of her birthday last year. She only knew herself. A couple of months ago we showed her a picture of Cori with her foster mom and asked her who that was. She pointed to me and said, "You."
Well, that sounds pretty healthy to me, although I do have all of my teeth. But that anonymous woman poured herself into this most amazing child and then she let her go.
As Cori turns four, I pray God tells her what a good job she did, and that her fiery eyed Yi Hua is doing very very well.
Than you God. You gave me children I did not bear in my body. You let me raise girls another mother could not. Please, pour out the blessing of Yourself on them!
Sunday, May 22, 2011
Cori's First Trip to the Beach
It has always felt like a big deal the first time we take our children to the beach, especially for our adopted children. To think they would not have seen the vast ocean or built a sand castle or chased sea gulls down the shore.............We are just so thankful that we got to do this with them! Cori loved it from the very beginning. Her peals of laughter surely must have reached some far away dolphin ears and brought them near the shore to see what was up. Watching her big sisters take her into the ocean and the pool where they loved being a part of her first time was deeply rewarding.
When we adopt we are giving our older children something rare and special, but we are also asking them to give up some of our time and money and freedoms. We are asking them to take on more responsibility.
So to Jessica, Taylor, Blake, Katherine, and Grace I want to say, "Thank you. We are so proud of you and love you so very much! You are wonderful big siblings. We could not do this without your support."
Cincinnati Children's Hospital now has all of Cori's medical files and we expect to be hearing from them this week about an appointment soon. Thank you for praying that we get her to the absolute best specialists.
Friday, April 29, 2011
Cori's First Easter
First Easter as a Wright has been important to us since Jena's adoption. We have a special wall with that picture beside a water color from Susan Crouch made especially for the girls. A rose for Jena Rose, and Lily for Lily Renae. Last week Cori pointed to that wall and asked, " Where Cori?" We told her it would happen soon.
This Easter will be in my memory for many years. Praise and worship was awesome. The message fro Bruce Frank was to the wall. Over 9000 people came to church in 4 services. My teen daughters served the children in AMP every service. The lines to church were a mile long on the interstate.....and it was well worth the wait!
This Easter was the end of a week long fast. It was truly a blessing. For some reason, Wes and I never had a night alone during this week. Every night we had one or two daughters in bed with us. So Sunday came, and the tomb is empty!
We went to lunch and took Cori's picture. Wes took them back to the Easter Egg Scramble. By the time she got home she was sweaty, full of and empty of sugar, and in a full tantrum. I picked her up and took her to the hall. All of that hair was in her face. She was still crying. I showed her the matted and framed picture on the wall...........her face burst into smiles. I am on the wall with my sisters! I am a Wright.
It was glorious. It was an undeserved moment of complete joy for us.
This is the picture she saw on her first celebration of Christ arisen from the grave. She ate all the food and then she spent the rest of her day beside her grandmother, Wes' mom, Janna Whitley Wright.
There is a wealth that no one can measure. It is most easily perceived by those who have suffered the most loss................quote from Stephanie Cox Wright.
Wednesday, April 20, 2011
Hard thing to admit...We trusted the wrong people
We posted these and other questions on a blog we trust. We have had a resounding response that we must take Cori to Children's Hospital in Cincinnati, Ohio. It is the only pediatric colo-rectal center in this country. It kills me to think we trusted our pediatrician, who sent us to the local guy who mostly does circumcisions.
Is it possible that we let a guy operate on her who has only limited experience in this area? Please, God, no.
We have to wait for a referral from the pediatrician who examined her first who never mentioned cloaca anomoly.
Mr. Expert declared such before he ever saw her anatomy. Then he said it was a simple fix. Then her said the incontinence was temporary. Then he said he told us she might never re-achieve continence............While never admitting that she was completely continent in China and add days before his "corrective" surgery.
This is a child of God, not an experiment. PLEASE pray that God makes the way for the full truth, makes insurance pay, and restores her to dignity.
PS....if you read this and are on board, would you consider emailing me at anniewright@bellsouth.net?
Tuesday, April 5, 2011
What did abandoned kids experience?
A much better writer and public speaker published her blog yesterday about how much trauma her abandoned two year old son experienced that she will never know. It sounded a bell in my heart. This blog has been about Cori, but she would never be with us if we had not gone on a journey 7 years ago for Jena and 5 years ago for Lily. Last night was a big reminder as our region experienced violent and destructive storms. Lily wrapped her long and skinny body around mine from fear. She used to wake up in the car and she went ballistic if she did not know where we were. On our second trip to the beach she managed to lock herself into a closet. When I found her she was soaked in sweat and said she never wanted to go to the beach again. She was 7 weeks old when her mother left her at the base of a statue in a public park. She used to bite herself and bang her head on the floor. Today she melted in grief because Cori made a face at her. How can we fix what we do not know? Only God can do that. ......God, please enable us to be what our children really need.
Jena was 12 weeks old when she was abandoned. We know for a fact that her orphanage is a desperate place. One day after we got her she saw the orphanage director. She poured out silent tears that covered her shirt. She used to break down for no reason we could imagine. She was 6 before this stupid state would agree she was deaf......and even after 7 years of our unconditional love and her father's worship......she pulls our her eyelashes and eyebrows at night.
Her daddy was in the yard with her this weekend. The insurance is refusing to pay or the dr that puts the device in her mouth that holds the bone graft from her hip together. Her hip is still black......that was July 3 of last year.
Wes has said that if we won the publisher's house sweepstakes he would build a wing and bring in another dozen.
But last year we paid over 1 sixth of his take home pay for medical bills....not counting what he pays out of pocket to get the coverage. Not counting dental or prescriptions.
Whine whine whine.
And this relentless old woman keeps bringing faces before him.
So...you read because of Cori. We will get a second opinion the end of April......but all research says that the only way a child with her condition achieves urinary continence is with a catheter.
Good news.....it will be in her stomach, not her private access. She is in daily pain for the rash her condition causes. I found $10 plus wipes and we are trying combination of lotrimon af and cortizone to relieve her pain. She cries out....you hurt my bum. Breaks our hearts.
Friday, March 18, 2011
The real princess always sits the highest
This was taken on Katherine's 16th birthday. This is a pretty good illustration on daily life with Cori......"I am a Princess and I get to ride wherever I want!" Wes is fond of saying that Cori did not have to adjust to us. We are the ones who had to adjust to the princess in charge! Ha! Well, that is not entirely true because she is so precious and delightful. This week she asked me where daddy was. I told her he was at work, and like any normal 3 year old she asked, "Why?"
I said he worked to make money. She again asked why. I told her so we could eat. The next day she asked me where daddy was and I said work. She said, "Eat?" Yes, babydoll! She is a smart little cookie!
God daily knits our hearts together more and more.
A few weeks ago when I was seriously exhausted and feeling completely helpless, we were sitting at the back of a large Bible study group at my church. As we were singing she crawled into my lap and put her arms around my neck. She stayed there through all of the songs. As we closed our eyes for prayer I felt a woman's hand on my shoulder praying for me. As I held Cori I asked God to show me how to crawl up in His lap like she was in mine because I really needed to feel His arms around me. When the prayer ended I looked up and saw the woman was wiping away tears. After the meeting ended I went to tell her how just her prayer and touch had meant so much to me. She said, " I looked over and saw her in your arms and I thought of all the times God has let me climb up into His lap like that."
Wow. Thank you, God for showing me You are always listening. Thank you for telling me I am your princess.
Monday, January 17, 2011
Video link
We recorded Cori on Friday night. It was the second time had heard this song and sung to it. This particular night she added some hand motions. My purpose here is two fold: For you to see how absolutely precious and charming she is; and to bring home the point that she is now in a nation with the freedom to worship to worship the name of Jesus.http://www.vimeo.com/18899388
Poor quality, but if you can invest the 1:23 or so seconds it takes to see it, perhaps you will rejoice with us that one so small now has an opportunity to serve a living Saviour, that one so new to our family and home is so comfortable, outgoing, and obviously happy.
I hope the link works!
Thursday, January 13, 2011
A full New Year is ahead.
Cori's language is exploding at a dizzy pace.......So is her appetite! It has been our experience that orphans are convinced that all the food they now have may one day disappear, so they eat as if there is no tomorrow until they figure out this is their home, this is their family, this is their food and it will not go away.
( She is already outgrowing all of her 3T pants, but a wonderful co-worker of Wes' has sent us a couple of boxes of 4T shirts and 5T pants! What a blessing!!)
Jena and Lily used to make the most extraordinary food messes you can imagine. My "favorite" was the morning I heard a glass shatter before I was out of bed. I ran into the kitchen to find Jena pouring a second glass of milk while mixing chocolate syrup in it. They had already climbed to the top of the refrigerator on the drawer handles to obtain the oreos, and a full bag of honeynut cheerios was scattered over the floor. Good Morning, Mom!) I am pretty sure that is the day I walked into the gym and un-enrolled Katherine and Grace for a month so I could regain my bearings. )
Cori's favorite still seems to be noodles, but last week she ate every single centimeter of a baked potato.
Despite a different antibiotic to rule out infection as the cause, Cori still has complete urinary incontinence. We are happy to report that the solids are far more predictable and under control! Our prayer is for her complete healing and restoration!
I think we are going to be able to show China adequate pictures of how well she is doing!!
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