Because of the medications for the Bartter's Syndrome, it is very difficult for QiuLu to drink enough liquids. Before she was diagnosed, she would drink about three gallons of liquid a day. If she went an hour without drinking, her lips would become chapped. She was dehydrated.
So many doctors over the last three years and no one believed that what was happening to her was really happening. So many times I was told that what I described was not really possible. They said it was psychological. No one believed and now here we are. Something rare - Bartter's Syndrome.
We love the juicing. So far everything we have tried tastes so good. Now she gets liquid and
hopefully some much needed potassium. We are all getting extra nutrients.
I don't know if it is making a difference with QiuLu's kidney stones but I think my skin is looking better. Hmmm..didn't realize I would benefit.
Tuesday, December 31, 2013
Sunday, December 29, 2013
Juicing
Okay, I admit it. Nutrition is not my forte. Why God sent me a child that struggles nutritionally, loves fruits and vegetables and dislikes junk food, I cannot explain. I am the person who believes that a Snickers Bar is nutritionally complete.
But I have become introduced to Kris Carr through an I Can Do It seminar. She is incredibly inspiring. Stage 4 liver cancer, with no treatment options available, and she turns vegan and starts juicing. And I might add is grateful for her cancer. Ten years later, her tumors are smaller. I am truly inspired.
If she can be grateful for liver cancer, I can be grateful for Bartter's Syndrome. Okay, I am working on that one. Not there yet.
But because Kris is so inspiring, she inspired me to begin juicing. I know I am not changing QiuLu's genes but what if juicing can change her body so some of the harsh medications used for the Bartter's Syndrome could be decreased? What if it changed how her body expressed those genes? Worst case, nothing changes. Since we have nothing to lose, we are juicing. Maybe it will help dissolve some of those kidney stones.
But I have become introduced to Kris Carr through an I Can Do It seminar. She is incredibly inspiring. Stage 4 liver cancer, with no treatment options available, and she turns vegan and starts juicing. And I might add is grateful for her cancer. Ten years later, her tumors are smaller. I am truly inspired.
If she can be grateful for liver cancer, I can be grateful for Bartter's Syndrome. Okay, I am working on that one. Not there yet.
But because Kris is so inspiring, she inspired me to begin juicing. I know I am not changing QiuLu's genes but what if juicing can change her body so some of the harsh medications used for the Bartter's Syndrome could be decreased? What if it changed how her body expressed those genes? Worst case, nothing changes. Since we have nothing to lose, we are juicing. Maybe it will help dissolve some of those kidney stones.
I Don't Understand
On Monday, despite the supplement, her potassium level was lower. She was admitted to the hospital.
It was a week of tests and confusion. I understood why we were there but I didn't understand how we got there. They explained her potassium level was on a decline since she arrived home three years prior. Her kidneys were wasting potassium and we needed to figure out why.
But things were going well, for us. I understood that for most kids this would not be considered well but for us, it was good.
Kidney stones were discovered in her left kidney. The morning after she was admitted, the Resident working with the kidney doctors came in early in the morning. She said she had been up all night researching and felt she had the answer for everything QiuLu had experienced since she came home - kidney stones, vomiting, Failure to Thrive, inability to eat. She thought she had Bartter's Syndrome.
Interesting. The great debate since she came home was if she was premature or if she was small for gestational age. Many physicians felt to be one pound at birth would not allow her to survive in China. They obviously did not see the determined child I had. I was convinced her determination caused her to survive. That negative quality was so positive for her.
Several days later and many tests later, some of which the hospital had no experience in running, QiuLu was officially diagnosed with Bartter's Syndrome. A rare genetic condition that causes the kidneys to waste electrolytes. It is estimated to affect 1 in 1.2 million people. Due to the fluid build up in pregnancy, it can cause small for gestational age and a premature birth.
They kept her in the hospital a few more days to get the medication started. I asked how much experience the hospital had with the condition and the response was "we have seen it." I do not know if they saw it in person or textbooks but we have had a few medical encounters since the diagnosis and we are always met with the same response - "how do you spell that?"
They will tell us the prognosis is unknown. I assume that is because it is so rare.
I am convinced this child is meant to be here. Nothing else explains how she survived this long without treatment. I am equally convinced we are meant to be together. There is a purpose. And I am on the journey to figure our that purpose.
It was a week of tests and confusion. I understood why we were there but I didn't understand how we got there. They explained her potassium level was on a decline since she arrived home three years prior. Her kidneys were wasting potassium and we needed to figure out why.
But things were going well, for us. I understood that for most kids this would not be considered well but for us, it was good.
Kidney stones were discovered in her left kidney. The morning after she was admitted, the Resident working with the kidney doctors came in early in the morning. She said she had been up all night researching and felt she had the answer for everything QiuLu had experienced since she came home - kidney stones, vomiting, Failure to Thrive, inability to eat. She thought she had Bartter's Syndrome.
Interesting. The great debate since she came home was if she was premature or if she was small for gestational age. Many physicians felt to be one pound at birth would not allow her to survive in China. They obviously did not see the determined child I had. I was convinced her determination caused her to survive. That negative quality was so positive for her.
Several days later and many tests later, some of which the hospital had no experience in running, QiuLu was officially diagnosed with Bartter's Syndrome. A rare genetic condition that causes the kidneys to waste electrolytes. It is estimated to affect 1 in 1.2 million people. Due to the fluid build up in pregnancy, it can cause small for gestational age and a premature birth.
They kept her in the hospital a few more days to get the medication started. I asked how much experience the hospital had with the condition and the response was "we have seen it." I do not know if they saw it in person or textbooks but we have had a few medical encounters since the diagnosis and we are always met with the same response - "how do you spell that?"
They will tell us the prognosis is unknown. I assume that is because it is so rare.
I am convinced this child is meant to be here. Nothing else explains how she survived this long without treatment. I am equally convinced we are meant to be together. There is a purpose. And I am on the journey to figure our that purpose.
Things Are Going Well For Us
Three years after she came home, QiuLu was stable, for her. We never missed medication doses. I had our routine down and never varied from it. She only got sick about once a week and she would gain about 1 pound in six months. For us, this was good.
One day in September 2013, I was notified that I was late getting her blood work done for the growth hormone. So we quickly got it. 1 1/2 hours from the time it was drawn, the doctor's office called. They asked how she was feeling. I told them things were good, for us. They explained her potassium was quite low. They said it could be fluke. She should eat high potassium foods for a few days and retake the test.
She had the blood test taken on Friday. I went to lunch with co-worker and said it had been five hours since the test was taken and no one called so that must be good news. No sooner had I said it, and the Doctor walked up behind me and said we needed to talk. She was at the same restaurant. She explained her potassium level was lower so she would need a supplement over the weekend and to repeat the test on Monday. She also explained she had been in conference with pediatric kidney specialists all morning. I was scared and asked if I should be worried. She said "Let's get through Monday."
One day in September 2013, I was notified that I was late getting her blood work done for the growth hormone. So we quickly got it. 1 1/2 hours from the time it was drawn, the doctor's office called. They asked how she was feeling. I told them things were good, for us. They explained her potassium was quite low. They said it could be fluke. She should eat high potassium foods for a few days and retake the test.
She had the blood test taken on Friday. I went to lunch with co-worker and said it had been five hours since the test was taken and no one called so that must be good news. No sooner had I said it, and the Doctor walked up behind me and said we needed to talk. She was at the same restaurant. She explained her potassium level was lower so she would need a supplement over the weekend and to repeat the test on Monday. She also explained she had been in conference with pediatric kidney specialists all morning. I was scared and asked if I should be worried. She said "Let's get through Monday."
Something Is Wrong
It was clear this child could not and eat and when she ate a little, it was very, very little. And then she could not keep it down.
The pediatrician's office would not let me past the front office. No appointment for us! It was just the flu. I persisted that a child does not get the stomach flu every day for months. Finally an appointment. She was diagnosed with GERD and given some medication.
After a few weeks, it wasn't better. They said they just needed to change her to Prevacid. It did make it a LITTLE (emphasis on the word little) better. After one year, she had no growth. None. Not in height, not in weight. They gave me an appointment for September. 11 months after she arrived home.
A lot of testing began. All came out good. At least that is how it was always presented. Good news, Kim. The test did not pick up any abnormality. She was referred to a Gastrologist. I was certain they would figure it out.
And they tried. But several tests later, there was nothing but good news - We did not find anything. At this point, I couldn't figure out if that was good news. I did not want anything to be wrong but something was and no one could figure it out. Endocrinologist did tests and started growth hormone. Genetic testing, food therapy, countless tests, follow ups and referrals to more specialists. Failure to Thrive, Short Stature, Dysphagia, and GERD were her diagnosis. Many medications but no answers. The symptoms continued.
She was teased when she started school because the six year old in Kindergarten was the size of a two year old. The worries about how she would navigate mounted. The pressure from school who protested every time she left for her medical appointments mounted.
My search continued. I took her a holistic doctor. I stood in the health food stores countless times looking for the answer. If someone had told me stand on my head, spin around and chant, I would have. I was frustrated. Imagine how QiuLu felt.
She became afraid to go to public places because she would get no warning when she would get sick. More than once, people stared, commented how a mother could take her sick child out in I worried about the emotional toll this was taking on her.
When one doctor became frustrated, we would get referred back to Gastrology or another Specialist. One referral was to feeding therapy because I was told this could be in her head.
Really??? They didn't see the retching. It felt like we were on our own.
China Again
My daughter and I went off to China to become a family of three. Just as surreal as the first time only with a four year old.
She hardly ate anything. I thought it was most likely because of the transition. When I said hardly, it was more like nothing. Maybe a few pieces of watermelon. The orphanage said she ate everything and she would pick out her foods. But not with us. I dismissed it to the transition.
She also hit and bit my daughter and I. She was very possessive of her bed. Mostly likely the result of the transition.
During the trip, I asked our guide if she could take us to a store to buy some clothes and things for my new daughter. She took us and as we were entering the store, my youngest daughter asked the guide in Chinese why were there. Our guide explained it was because I wanted to buy her things. With her eyes wide and her mouth gaping open, she held her two hands to each side of her face and said in Chinese, "For me?"
She wanted everything in that store and had difficulty making a choice. Not surprising. But she absolutely wanted a pair of pink tennis shoes she saw on the shelf. And she got them. That night back at the hotel, she refused to take off her new pink tennis shoes and slept in them all night.
Fast forward to our flight home. We had successfully made it back to the United States and were waiting for our last flight home. At the Detroit airport, we were early so we got something to eat. My newest daughter, QiuLu, ate very little again.
We moved onto the gate albeit early. We were the only three there with LuLu sitting between my oldest daughter and I. With no warning, QiuLu became sick with projectile vomit. My oldest daughter has never to this day became sick like that. While I wasn't a new mother, this was new to me. I knew I was unprepared from experience. I mistakenly thought she must have the flu. This was the beginning of the next phase of our life.
She hardly ate anything. I thought it was most likely because of the transition. When I said hardly, it was more like nothing. Maybe a few pieces of watermelon. The orphanage said she ate everything and she would pick out her foods. But not with us. I dismissed it to the transition.
She also hit and bit my daughter and I. She was very possessive of her bed. Mostly likely the result of the transition.
During the trip, I asked our guide if she could take us to a store to buy some clothes and things for my new daughter. She took us and as we were entering the store, my youngest daughter asked the guide in Chinese why were there. Our guide explained it was because I wanted to buy her things. With her eyes wide and her mouth gaping open, she held her two hands to each side of her face and said in Chinese, "For me?"
She wanted everything in that store and had difficulty making a choice. Not surprising. But she absolutely wanted a pair of pink tennis shoes she saw on the shelf. And she got them. That night back at the hotel, she refused to take off her new pink tennis shoes and slept in them all night.
Fast forward to our flight home. We had successfully made it back to the United States and were waiting for our last flight home. At the Detroit airport, we were early so we got something to eat. My newest daughter, QiuLu, ate very little again.
We moved onto the gate albeit early. We were the only three there with LuLu sitting between my oldest daughter and I. With no warning, QiuLu became sick with projectile vomit. My oldest daughter has never to this day became sick like that. While I wasn't a new mother, this was new to me. I knew I was unprepared from experience. I mistakenly thought she must have the flu. This was the beginning of the next phase of our life.
Something is Missing
I loved being a mother to my daughter. What could be better? Maybe a mother to two?
That was not an easy task. When I leave this planet, I want my daughter to have someone else who is family. Finally in 2006 I was approved to adopt again.
My then five year old was not happy. She could articulate that she did not want to share me or her toys. But this was not her decision, it was mine. And so the wait began again.
During the extremely long wait (of which I will spare you the details), I informed my agency that I was open to a waiting child. They graciously took all the information but shared that they preferred two parents for waiting children. Understood.
A few years later, I received an email from my agency asking if I would consider a waiting child who was described a being born premature. Not much information was available other than the paperwork indicated that at her current age of 4, she was extremely tiny. The size of a 1 to 2 year old.
I had a medical evaluation of the paperwork done. The recommendation was not to accept the referral unless China provided more details. I shared that with the agency who said they would ask but also shared it is very rare to get any more details. So I declined the referral. My heart was broken because I had already connected with that little girl. My older daughter's heart was broken too. While she was against the adoption, this one she was open to because the child was 4 and not a baby.
Well I may have declined but not everyone did. Sometimes things that are meant to be will continue to happen regardless of what we do. A few weeks later, the agency sent another email with a one page written narrative about that child. I had another medical evaluation done but the physician was very short and demanded that I decline the referral as he felt severe malnutrition had set in. I looked in the eyes of the picture of that sweet child and I felt a connection in my heart. So I turned to my daughter's pediatrician who said bring her home and it will be slow be we can work on this together.
That's exactly what I did.
That was not an easy task. When I leave this planet, I want my daughter to have someone else who is family. Finally in 2006 I was approved to adopt again.
My then five year old was not happy. She could articulate that she did not want to share me or her toys. But this was not her decision, it was mine. And so the wait began again.
During the extremely long wait (of which I will spare you the details), I informed my agency that I was open to a waiting child. They graciously took all the information but shared that they preferred two parents for waiting children. Understood.
A few years later, I received an email from my agency asking if I would consider a waiting child who was described a being born premature. Not much information was available other than the paperwork indicated that at her current age of 4, she was extremely tiny. The size of a 1 to 2 year old.
I had a medical evaluation of the paperwork done. The recommendation was not to accept the referral unless China provided more details. I shared that with the agency who said they would ask but also shared it is very rare to get any more details. So I declined the referral. My heart was broken because I had already connected with that little girl. My older daughter's heart was broken too. While she was against the adoption, this one she was open to because the child was 4 and not a baby.
Well I may have declined but not everyone did. Sometimes things that are meant to be will continue to happen regardless of what we do. A few weeks later, the agency sent another email with a one page written narrative about that child. I had another medical evaluation done but the physician was very short and demanded that I decline the referral as he felt severe malnutrition had set in. I looked in the eyes of the picture of that sweet child and I felt a connection in my heart. So I turned to my daughter's pediatrician who said bring her home and it will be slow be we can work on this together.
That's exactly what I did.
Gotcha Day
Don't you just love those words? I do! Even though this all occurred 11 years ago, those words still bring love and happiness to my heart.
After we arrived in province, we hurried to the hotel then to the governmental affairs office. In a separate room, we could hear babies crying, one rather loudly. We were in a separate room so we could not see them.
Prior to this moment, the other mothers were excited. For days they kept asking me if I felt excited too. I felt nothing. No one emotion, nothing. I told my Mom that I thought it may be a sign that something was wrong and adoption would not proceed.
As the babies cried, I still felt nothing. I had never in my life felt void of all emotion. I prepared myself to be the last person to receive her child. I also told my mom that the baby that was crying the loudest was most likely mine. Optimism at its best. :)
Well, I was not last. I was second. I didn't know what to expect as they called me before the first couple walked back into the room where we waited. They took me down the hall to where the babies were. The nannies asked me if I could pick out my baby. WHAT?? I wondered I would do that since I only had one picture and who knows how long ago that was taken. I also wondered if I picked incorrectly, if they kept the baby. It doesn't make sense, I know but I felt vulnerable.
I scanned the room and said I didn't know I could do this but I pointed to one. All the nannies broke into laughter. To myself, I thought they were laughing that I did not know my own child. At that moment, the nanny holding the baby I pointed took a step forward as she looked at the baby and said "Mama" while pointed to me." I picked correctly! Not only that but right before was the person that I waited my whole life to meet. The baby nervously smiled and reached her arms out to me. (I had sent a picture book of me and other she would meet. It was clear the nannies had shared it with her and she had it in her hands at that moment. Her reaction was most likely a response a familiarity.)
I carried her back to the other room. She was nervous but not crying. For the next several minutes, life was surreal. There was a lot of commotion around us but to me, my daughter and I were the only two that existed in the universe.
By the time we boarded the bus for the ride back to the hotel, my daughter was laughing. At one year old, she was perfect. Perfect in every way.
That is how I became a mother. This is the highlight of my life.
After we arrived in province, we hurried to the hotel then to the governmental affairs office. In a separate room, we could hear babies crying, one rather loudly. We were in a separate room so we could not see them.
Prior to this moment, the other mothers were excited. For days they kept asking me if I felt excited too. I felt nothing. No one emotion, nothing. I told my Mom that I thought it may be a sign that something was wrong and adoption would not proceed.
As the babies cried, I still felt nothing. I had never in my life felt void of all emotion. I prepared myself to be the last person to receive her child. I also told my mom that the baby that was crying the loudest was most likely mine. Optimism at its best. :)
Well, I was not last. I was second. I didn't know what to expect as they called me before the first couple walked back into the room where we waited. They took me down the hall to where the babies were. The nannies asked me if I could pick out my baby. WHAT?? I wondered I would do that since I only had one picture and who knows how long ago that was taken. I also wondered if I picked incorrectly, if they kept the baby. It doesn't make sense, I know but I felt vulnerable.
I scanned the room and said I didn't know I could do this but I pointed to one. All the nannies broke into laughter. To myself, I thought they were laughing that I did not know my own child. At that moment, the nanny holding the baby I pointed took a step forward as she looked at the baby and said "Mama" while pointed to me." I picked correctly! Not only that but right before was the person that I waited my whole life to meet. The baby nervously smiled and reached her arms out to me. (I had sent a picture book of me and other she would meet. It was clear the nannies had shared it with her and she had it in her hands at that moment. Her reaction was most likely a response a familiarity.)
I carried her back to the other room. She was nervous but not crying. For the next several minutes, life was surreal. There was a lot of commotion around us but to me, my daughter and I were the only two that existed in the universe.
By the time we boarded the bus for the ride back to the hotel, my daughter was laughing. At one year old, she was perfect. Perfect in every way.
That is how I became a mother. This is the highlight of my life.
Coincidences??
Do you believe in coincidences?
When I was finally allowed to go to China, the plane landed one day after my daughter's birthday. Oh, was I disappointed. There is not control over the schedule though.
I asked my Mom to accompany me on the trip. Her birthday was on June 2nd. For those of us traveling, we were scheduled to be united with our children on June 3rd. All my Mom could talk about was how she wished I could be united on her birthday. She said it would be wonderful birthday present for her. There was nothing I could do.
After arriving on May 29th, there was a flurry of activity. Much of it sight seeing. The next day we learned there was a schedule change. On June 2nd, we were scheduled to fly into the province the children resided and that would still occur. However, we were no longer scheduled to be united with our children on June 3rd. Instead we would receive them on June 2nd.
Somebody is watching out for us.
When I was finally allowed to go to China, the plane landed one day after my daughter's birthday. Oh, was I disappointed. There is not control over the schedule though.
I asked my Mom to accompany me on the trip. Her birthday was on June 2nd. For those of us traveling, we were scheduled to be united with our children on June 3rd. All my Mom could talk about was how she wished I could be united on her birthday. She said it would be wonderful birthday present for her. There was nothing I could do.
After arriving on May 29th, there was a flurry of activity. Much of it sight seeing. The next day we learned there was a schedule change. On June 2nd, we were scheduled to fly into the province the children resided and that would still occur. However, we were no longer scheduled to be united with our children on June 3rd. Instead we would receive them on June 2nd.
Somebody is watching out for us.
How did I get here?
That's the question. It's a long story...
Even when I was a teenager, I knew that I would adopt as a way to add to my family. Sometimes I would mention it out of the blue at the dinner table, probably for the drama.
Many years later, I was fearful that my family would never happen. I had a dream where I saw my Grandmother who past several years earlier. She told me not to worry and everything would be okay. I told her she had no idea what was going on in my life as she had been gone so long. She reassured me, it would be okay.
Then life became hard. At a time when it made no sense, I felt a heavy burden. The burden was to decide whether to adopt. Logically, adopting did not make sense. But I knew I had to decided. I requested information from 100's of agencies. I finally landed on China. I decided if it was meant to be, it would happen despite myself.
Every step moved forward, then I waited for a referral. 14 months of waiting. During the long, painful wait, I had doubts. I asked God to send me confirmation that if a referral happened that this child was meant to be mine. Then I told God if her Chinese name had "Mei" in it, I would know that someone from above watched over her while we waited. And if her birthday was in the month of May, I would know she would be meant for me. May was the birthday month of the grandmother who was in my dream.
On April 5, after 14 long, painful months of waiting, the call finally came. The agency told me they couldn't give me much information as they were still verifying the details. But April 5 was my grandfather's birthday, this must be meant to be. So I asked them, "Just tell me - what is her Chinese name?" They told me Mei Guo Huan. I knew in an instant this was my child. Then I asked what her birthday was. You guessed it! It was in May.
That started my journey. My dream of becoming a mother to one of the most wonderful beings on the planet started.
Even when I was a teenager, I knew that I would adopt as a way to add to my family. Sometimes I would mention it out of the blue at the dinner table, probably for the drama.
Many years later, I was fearful that my family would never happen. I had a dream where I saw my Grandmother who past several years earlier. She told me not to worry and everything would be okay. I told her she had no idea what was going on in my life as she had been gone so long. She reassured me, it would be okay.
Then life became hard. At a time when it made no sense, I felt a heavy burden. The burden was to decide whether to adopt. Logically, adopting did not make sense. But I knew I had to decided. I requested information from 100's of agencies. I finally landed on China. I decided if it was meant to be, it would happen despite myself.
Every step moved forward, then I waited for a referral. 14 months of waiting. During the long, painful wait, I had doubts. I asked God to send me confirmation that if a referral happened that this child was meant to be mine. Then I told God if her Chinese name had "Mei" in it, I would know that someone from above watched over her while we waited. And if her birthday was in the month of May, I would know she would be meant for me. May was the birthday month of the grandmother who was in my dream.
On April 5, after 14 long, painful months of waiting, the call finally came. The agency told me they couldn't give me much information as they were still verifying the details. But April 5 was my grandfather's birthday, this must be meant to be. So I asked them, "Just tell me - what is her Chinese name?" They told me Mei Guo Huan. I knew in an instant this was my child. Then I asked what her birthday was. You guessed it! It was in May.
That started my journey. My dream of becoming a mother to one of the most wonderful beings on the planet started.
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