About two weeks before the cruise, QiuLu came down with the stomach flu. Because of the flu, I asked for a blood test to confirm her electrolyte levels because the stomach flu can be a little more serious in someone with Bartter's.
The blood test results were a little different that we typically see. Her physician thinks the medication used to treat Bartter's has now damaged her kidneys. The very thing they are meant to help. I knew the treatment for Bartter's was aggressive and could cause very nasty side effects so this is not a total surprise. It is disappointing because it is happening so quickly. So one of the medications has been reduced. Time will tell the impact of that.
Next week is a big week for QiuLu. She has another surgery for the wandering eye. The surgery in November caused double vision so she sees two of everything and has since she woke up from surgery. The day before the surgery she has some tests done to see if there is anything that can be done about her left kidney that is calcifying thanks to the Bartter's Syndrome.
She is so brave. She has more medications than adults. So many medical appointments and tests. Some times she has difficulty at school. She believes the other kids are smarter. She doesn't understand, as the school doesn't, that if your potassium is low, your mind can be foggy. Imagine, this woman comes and takes from China to the Unites States. You are 4 years old and do not know English. She brings to the US and everything is new. The people, the smells, the language, the food, everything. But she didn't have melt downs. All the while, you have this condition that no one is aware of when they became aware of it they really won't know a lot about it because it is so rare. You enter a school where you a learning English and Chinese. You love it but it takes effort. For two year's, the school has reported that QiuLu has low stamina. You are criticized because you do not speak clearly. You are criticized for being tired. You are made fun of by the other kids because you are so small compared to them. Adults do not believe you when you say you are seven because you are so small so they always look your mom to confirm. You have spent your entire life (until 7) dehydrated because no one could figure out why you drank so much water. You go from doctor to doctor, test to test. You are so familiar with vomiting, it is a regular event and you know how take care of yourself if your mom isn't around. Medications are so much of routine for you, you become nervous if they are given late. Sometimes you remind people that you need them because you are afraid that if you do get them, you will get very sick again. This is her life. Yet every day, she gets up and charges through life. The negative must be making an impact but she doesn't let on, if it is. Her issue isn't noticeable when you see her. But it does have an impact on everything she does. She is so tired at the end of the school day. It is reported on her report card that she does not have the stamina of other kids her age. Really? I tend to disagree. This kid has more stamina. Show me a kid that will push Show me a kid with her resolve. Show me a kid who has had to deal with everything she had in the first seven years of their life. Show me a kid who everyone says is so happy who has to deal with all of those things. I know QiuLu is not the only child but I also know those children, including QiuLu, are extraordinary. They have stamina that we cannot even imagine. We can all learn a lot from them if we only stop for a moment and put our expectations of success aside. I see extraordinary achievement in my child every day.
Saturday, April 19, 2014
Family Time
We have been a little busy which has caused me to be a little out of touch.
My oldest daughter was disappointed we were not going anywhere on spring break. We never go anywhere so her disappointment caught me by surprise. She explained we have talked about going to Disney World (which she has been to twice but QiuLu has not) and a cruise. Yes, it is true and we have talked about it for a long time. Life just gets in the way.
It also reminded me that when QiuLu was in the hospital last fall and we finally discovered that Bartter's Syndrome was the cause of all her medical issues, If she leaves this life before she is really old, I want her to be able to say she had a great life. I promised myself that I would make my kids my number on priority. They have also been a priority but I am a single mom and my job has provided so many opportunities for us. The trade off of those opportunities is the I work a lot. It is a very delicate balance between working to meet an employer's expectations to continue the income stream, manage medical conditions and appointments while creating memories.
So we went on a cruise for Spring Break. Oh, it was lovely. Roatan, Belize, Cozumel and Key West. The crew on the ship were absolutely fabulous. They had a kids program and the kids that went seem like they had a great time. When I suggested that we sign up, my oldest reminded me that this was to be family time. She did not understand how we would have family time if we were separate. She is very wise.
A few highlights of the trip- We participated in a dolphin encounter. Our dolphin was Polli. She is three years old and lives in the Caribbean Sea with her entire family. We have many pictures of us with Polli and learned each dolphin makes a sound that is unique to them - it is the equivalent of their name. This was proven as Polli was vocal. Her mom would come would very quickly, from no where, when Polli said her name. Her mom was check her out and when she was satisfied Polli was just fine, she would about her business. We also learned how chocolate is made from the Cocoa bean. We even made two chocolate bars of our own beginning with the bean. I will not complain about the price of chocolate again. It is a lot of work. The other highlight is hopefully the girls have some memories.
My oldest daughter was disappointed we were not going anywhere on spring break. We never go anywhere so her disappointment caught me by surprise. She explained we have talked about going to Disney World (which she has been to twice but QiuLu has not) and a cruise. Yes, it is true and we have talked about it for a long time. Life just gets in the way.
It also reminded me that when QiuLu was in the hospital last fall and we finally discovered that Bartter's Syndrome was the cause of all her medical issues, If she leaves this life before she is really old, I want her to be able to say she had a great life. I promised myself that I would make my kids my number on priority. They have also been a priority but I am a single mom and my job has provided so many opportunities for us. The trade off of those opportunities is the I work a lot. It is a very delicate balance between working to meet an employer's expectations to continue the income stream, manage medical conditions and appointments while creating memories.
So we went on a cruise for Spring Break. Oh, it was lovely. Roatan, Belize, Cozumel and Key West. The crew on the ship were absolutely fabulous. They had a kids program and the kids that went seem like they had a great time. When I suggested that we sign up, my oldest reminded me that this was to be family time. She did not understand how we would have family time if we were separate. She is very wise.
A few highlights of the trip- We participated in a dolphin encounter. Our dolphin was Polli. She is three years old and lives in the Caribbean Sea with her entire family. We have many pictures of us with Polli and learned each dolphin makes a sound that is unique to them - it is the equivalent of their name. This was proven as Polli was vocal. Her mom would come would very quickly, from no where, when Polli said her name. Her mom was check her out and when she was satisfied Polli was just fine, she would about her business. We also learned how chocolate is made from the Cocoa bean. We even made two chocolate bars of our own beginning with the bean. I will not complain about the price of chocolate again. It is a lot of work. The other highlight is hopefully the girls have some memories.
Tuesday, February 11, 2014
Finally Grateful
So I haven't posted in awhile. I have been working on trying to be grateful for Bartter's Syndrome. If Kris Carr can be grateful for stage IV liver cancer, can't I be grateful for Bartter Syndrome? Not so easy for me.
Well I was talking with a friend. She was sharing her realization that everything in life sets us up for the next step. The next morning, I was reflecting on our conversation. Then I realized if it were not for Bartter's Syndrome, I would not have become a great believer in Kris Carr. If I hadn't found Kris Carr, I wouldn't have found juicing. If it weren't for Bartter's Syndrome, I would not have realized priorities in my life need to change and I would not have began and continued on the spiritual journey I have been on. All that because of Bartter's Syndrome. The break through is that finally I have found a reason to be grateful for Bartter's Syndrome.
Well I was talking with a friend. She was sharing her realization that everything in life sets us up for the next step. The next morning, I was reflecting on our conversation. Then I realized if it were not for Bartter's Syndrome, I would not have become a great believer in Kris Carr. If I hadn't found Kris Carr, I wouldn't have found juicing. If it weren't for Bartter's Syndrome, I would not have realized priorities in my life need to change and I would not have began and continued on the spiritual journey I have been on. All that because of Bartter's Syndrome. The break through is that finally I have found a reason to be grateful for Bartter's Syndrome.
Tuesday, January 7, 2014
Book Review: Forgiveness
I read the book "Forgiveness" by Iyanla Vanzant. I received the book from Hay House for review purposes. I was not compensated for the review and it is based on my own personal experience and opinion.
The book walks readers through a 21 day program of forgiveness to heal yourself. It challenges us to let of past hurts and embrace a new pattern using the power of forgiveness. The book obviously caught my attention because I wanted to read it. I was not prepared for how it would change me.
It walks readers through each step including a daily mediation, prayer, journaling, tapping and a gratitude meditation. I really liked the straightforward steps. While it sounds like a lot to do each day, it really only takes 30 to 60 minutes. In fact, each time I was closer to 30 minutes.
When I first received the book, I thought I had few things to forgive but couldn't imagine each forgiveness applied to me. Was I wrong. She identifies your mother, father, yourself, your partner, your judgments, and even God. I was surprised how much I had to forgive, especially myself. The insights I had about myself were powerful and many were surprising. So surprising that I went through it quicker than 21 days because I could not wait to get to the next step of forgiveness. Each step lead to a feeling of relief and encouragement. The relief surprised me because I did not realize the burdens I had been carrying. Forgiveness is a powerful, uplifting emotion.
I would highly recommend this book for anyone on any journey. You may be surprised at what you realize about yourself! I am grateful to Iyanla Vanzant for guiding me on my journey!
Monday, January 6, 2014
Time Together
The girls want to go on vacation. It seems like a reasonable request especially given everything that QiuLu has gone through.
She wants to camp. I am not really the camping type. I tried that once before QiuLu joined the family. The easy part was putting up the tent. The difficult part was starting a fire, cooking, keeping dry during the storms (and there were many) and horse back riding. None of it is for me. When I was growing up, we only took two vacations and both involved a tent and camping. I remember laying awake at night vowing to myself that when I grew up, I would earn enough money to stay in a hotel And that is my reality. I am just not good at camping. It's too rustic for me. Hotels, pools and hot tubs are more friendly for me.
Perhaps we will go to Disney World. QiuLu loves Mickey Mouse. She would just an encounter with Mickey, himself! Perhaps we can figure out the timing, her medication schedule and how to transport the meds and finances.
She wants to camp. I am not really the camping type. I tried that once before QiuLu joined the family. The easy part was putting up the tent. The difficult part was starting a fire, cooking, keeping dry during the storms (and there were many) and horse back riding. None of it is for me. When I was growing up, we only took two vacations and both involved a tent and camping. I remember laying awake at night vowing to myself that when I grew up, I would earn enough money to stay in a hotel And that is my reality. I am just not good at camping. It's too rustic for me. Hotels, pools and hot tubs are more friendly for me.
Perhaps we will go to Disney World. QiuLu loves Mickey Mouse. She would just an encounter with Mickey, himself! Perhaps we can figure out the timing, her medication schedule and how to transport the meds and finances.
Wednesday, January 1, 2014
You Are One In a Million
QiuLu has strabismus. Some websites indicate this may be related to Bartter's Syndrome. In any case, we came to the point where surgery was the only option. It was scheduled before the diagnosis of Bartter's Syndrome was made.
Because the medical community has very little answers about Bartter's Syndrome, I prefer to use Google. That gets me in trouble most times. It is my only option and I am unable to get guidance from her physicians. I am tired of being asked to spell the name of Bartter's Syndrome and all her medications. Shouldn't they know???
Anyway, Google has a lot of information that may be difficult to manage a patient with Bartter Syndrome under anesthesia. I tried for several weeks to make sure those taking care of her on the day of surgery would receive the information so they would be prepared. I was assured the anesthesiologist would have the details three days before surgery.
The day before surgery we had not received the pre-surgery call. So I called. When I was able to talk to someone, I tried to explain the Bartter Syndrome again. It was clear she was hearing the words but not the message. She continued to respond to my concerns by telling me that they were all mothers in pre-procedure planning and they understood. She clearly does not understand that dehydration is of higher concern with this child than a child who does not have Bartter Syndrome. She also does not understand that I am scared. This is a new diagnosis for us and no one, not one person, can share information with us. I become overwhelmed and begin crying that no one cares that no one cares if something happens to this child. No one that is except for me. That gets her attention. She offers to page the anesthesiologist.
The surgeon told us the pre-procedure planning nurse would advise us on QiuLu's medications for the day of surgery. She receives them every 12 hours and they help me to maintain electrolytes which are important every day but especially during surgery. Well, the nurse refused. The surgeon's office refused. What was I going to do? I do not have medical background.
They tell me she can have clear liquids until 5:00 a.m. Because she must take her medications with food, I decide to alter medication schedule instead of skipping it. I wake her up at 4:00 a.m. and ask her to drink a Pedialyte Clear and give her the medication. Hopefully this will help her maintain her electrolytes during surgery. This would be so much easier if someone who knew something about medicine were guiding me.
The next day we arrive for surgery and while I am going through the motions, I retain the right to not go through with surgery unless I feel comfortable with the answers. The anesthesiologist arrives and begins by saying he does not have answers to my questions about Bartter's Syndrome. Strangely that comforts me. He is the first person that outright admits he. I explain that I do not expect him to have all the answers. I know this is rare. It is estimated to affect 1 in 1.2 million. Yes, QiuLu you are truly one in a million, baby.
He does listen to me. He hears my concerns. He pulls his stool over to the computer and asks me to take him to the abstracts I read. He reads them. He explains what he will do if she has those complications. He makes no promises but he does provide me comfort, assurance and confidence.
You, doctor, are one a million too.
Because the medical community has very little answers about Bartter's Syndrome, I prefer to use Google. That gets me in trouble most times. It is my only option and I am unable to get guidance from her physicians. I am tired of being asked to spell the name of Bartter's Syndrome and all her medications. Shouldn't they know???
Anyway, Google has a lot of information that may be difficult to manage a patient with Bartter Syndrome under anesthesia. I tried for several weeks to make sure those taking care of her on the day of surgery would receive the information so they would be prepared. I was assured the anesthesiologist would have the details three days before surgery.
The day before surgery we had not received the pre-surgery call. So I called. When I was able to talk to someone, I tried to explain the Bartter Syndrome again. It was clear she was hearing the words but not the message. She continued to respond to my concerns by telling me that they were all mothers in pre-procedure planning and they understood. She clearly does not understand that dehydration is of higher concern with this child than a child who does not have Bartter Syndrome. She also does not understand that I am scared. This is a new diagnosis for us and no one, not one person, can share information with us. I become overwhelmed and begin crying that no one cares that no one cares if something happens to this child. No one that is except for me. That gets her attention. She offers to page the anesthesiologist.
The surgeon told us the pre-procedure planning nurse would advise us on QiuLu's medications for the day of surgery. She receives them every 12 hours and they help me to maintain electrolytes which are important every day but especially during surgery. Well, the nurse refused. The surgeon's office refused. What was I going to do? I do not have medical background.
They tell me she can have clear liquids until 5:00 a.m. Because she must take her medications with food, I decide to alter medication schedule instead of skipping it. I wake her up at 4:00 a.m. and ask her to drink a Pedialyte Clear and give her the medication. Hopefully this will help her maintain her electrolytes during surgery. This would be so much easier if someone who knew something about medicine were guiding me.
The next day we arrive for surgery and while I am going through the motions, I retain the right to not go through with surgery unless I feel comfortable with the answers. The anesthesiologist arrives and begins by saying he does not have answers to my questions about Bartter's Syndrome. Strangely that comforts me. He is the first person that outright admits he. I explain that I do not expect him to have all the answers. I know this is rare. It is estimated to affect 1 in 1.2 million. Yes, QiuLu you are truly one in a million, baby.
He does listen to me. He hears my concerns. He pulls his stool over to the computer and asks me to take him to the abstracts I read. He reads them. He explains what he will do if she has those complications. He makes no promises but he does provide me comfort, assurance and confidence.
You, doctor, are one a million too.
Tuesday, December 31, 2013
Still Juicing
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.
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.
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