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.
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