Seriously, when you think about being a parent or doing the act that could create a child, do you stop and think, "Will I have to decide to surgically attach my baby's head to his/her body?" Where is that in the "What to Expect" book? There are subjects not touched by that book. Maybe there was a parenting book that was supposed to come home with us when we, blissfully unaware, took our baby home for the first time. If there was one, I must have lost it. I still believe there is one out there that explains the rules for talking about why kids pick on kids at school or how to explain that Mommy's time in the bathroom should be "alone" time or the number of sick days a parent should get.
Even in the best book, I am sure there is not a chapter on how to explain to your 13 year old that she will have to have her head surgically attached to her body because when she does turn her head it comes off at least 70% of the way. Even if it had that chapter, I am pretty sure it does not explain the ins and outs of checking to see if she is hitting her vertebral artery in the process thus explaining some of the instant passing out she has done for the last year. As far as parenting goes, I think Chuck and I are the first to have two children undergo this procedure because of EDS.
I have a choice, I can ask why my kids? But this will do no good. (I've already tried it and it really does not do any good.) I could get really mad at the doctors for taking so long to diagnosis this, but to be honest, they are creating a brand new test just for Elizabeth to check to see if she is hitting her vertebral artery. I could get really scared and place her in a bubble until she has the surgery and worry every minute that if she turns her head she could have an instant stroke and die. (This is a real possibility by the way)
OR I could trust that God has taken care of her up until now. I can realize that we are ABUNDANTLY blessed! We live in the city with the best doctor for the job. If you read the previous post you will see that the modifications for the house are continuing and I am still unsure how we got all the funding we did to get this far. She will still alive and will be after this surgery over. I know that I know that I know it. I have REAL peace about everything and I believe this is a result of the many, many prayer said for us over the last 3 years. I know that it is peace from God because I am not strong enough to muster that much peace over the parking place I choose on my own, let alone a surgery that has the potential to be deadly.
There is a good amount of freaking out in my house right now and there will be more to come, but we are doing this together with God. He created the Heavens and the Earth and that little gnat that bugs us. He can handle attaching her head.
Tuesday, February 22, 2011
It Has Been 3 Years and I Want Off This Ride!
I know I have talked about changing the name of this blog, but today it is so true. I could not make this stuff up. I am going to start with the good, but it is very good. It is "blessed beyond belief" good. First, our elevator is installed and works! We have an elevator in our house. Do you have any idea how cool that is? This allows my husband and I to sleep in the same bed for the first time in 1 1/2 years! The elevator also means my daughter can move back to her room with a DOOR. This is incredible. God's grace is sufficient!
Work will continue to be done on the handicapped accessible bathroom tomorrow. The bathroom is drywalled and painted. Tomorrow the floor will be tiled. This bathroom will allow all of us to take a shower safer. It will also have a raised toilet seat which will put less pressure on my daughters hips, therefore, reducing her pain.
Plans for the accessible kitchen are in the works. The architects from Hearth Professionals made up some amazing changes that will hopefully allow all of us to cook in the kitchen with less pain and injuries. This is a miracle if you think about it. Just one year ago we were just talking about all of this stuff and now it is happening!
Just as crazy good it has been, there is another side. I do not want to take away from the appreciation that I have or the glory to God I give in sharing all of the following, but it is what it is.
Last Wednesday I got a call from my mom that my grandmother was in the hospital. She asked that I go in the next day as my mom was in a lot of pain and that day would be the 3 year anniversary of my dad's death in the same hospital. My grandma had to go into the hospital because she fell and hit her head. She was apparently bleeding from the rectum. When I went in that morning I found out that she had 2 transfusions. She was preparing to have a colonoscopy that day and the nurse asked if I would stay so that the doctor could talk to me. I ended up staying for 10 hours changing my poor grandmothers diapers every 30 minutes. The nurses were not able to come in quick enough and my grandmother could not make it to the bathroom. It turned out that she had a bleeding ulcer as a complication from her last surgery when my mom was in ICU a couple of years ago. The doctor put a clamp and medicine and she will be fine. She is a tough old bird!
I spent part of Friday with my grandma, but I had to go home so that I could take Elizabeth to get more imaging done of her neck. The neurologist said that she might be hitting an artery going to her brain that is causing her to pass out suddenly. This complication could mean that she could turn her head and have a stroke or die instantly. We had to go back twice because the techs messed up the imaging.
Saturday I spent in the ER with my mom. She was having such bad spasms in her back that we were unsure if she broke her back again. It turned out that it was just spasms and no breaks. Praise God, but she is still in a lot of pain.
All of this during the week that my dad died 3 years ago. My grandma was in the same hospital on the same day as the anniversary of his death. It has been 3 years, I am really tired!
Work will continue to be done on the handicapped accessible bathroom tomorrow. The bathroom is drywalled and painted. Tomorrow the floor will be tiled. This bathroom will allow all of us to take a shower safer. It will also have a raised toilet seat which will put less pressure on my daughters hips, therefore, reducing her pain.
Plans for the accessible kitchen are in the works. The architects from Hearth Professionals made up some amazing changes that will hopefully allow all of us to cook in the kitchen with less pain and injuries. This is a miracle if you think about it. Just one year ago we were just talking about all of this stuff and now it is happening!
Just as crazy good it has been, there is another side. I do not want to take away from the appreciation that I have or the glory to God I give in sharing all of the following, but it is what it is.
Last Wednesday I got a call from my mom that my grandmother was in the hospital. She asked that I go in the next day as my mom was in a lot of pain and that day would be the 3 year anniversary of my dad's death in the same hospital. My grandma had to go into the hospital because she fell and hit her head. She was apparently bleeding from the rectum. When I went in that morning I found out that she had 2 transfusions. She was preparing to have a colonoscopy that day and the nurse asked if I would stay so that the doctor could talk to me. I ended up staying for 10 hours changing my poor grandmothers diapers every 30 minutes. The nurses were not able to come in quick enough and my grandmother could not make it to the bathroom. It turned out that she had a bleeding ulcer as a complication from her last surgery when my mom was in ICU a couple of years ago. The doctor put a clamp and medicine and she will be fine. She is a tough old bird!
I spent part of Friday with my grandma, but I had to go home so that I could take Elizabeth to get more imaging done of her neck. The neurologist said that she might be hitting an artery going to her brain that is causing her to pass out suddenly. This complication could mean that she could turn her head and have a stroke or die instantly. We had to go back twice because the techs messed up the imaging.
Saturday I spent in the ER with my mom. She was having such bad spasms in her back that we were unsure if she broke her back again. It turned out that it was just spasms and no breaks. Praise God, but she is still in a lot of pain.
All of this during the week that my dad died 3 years ago. My grandma was in the same hospital on the same day as the anniversary of his death. It has been 3 years, I am really tired!
Thursday, January 6, 2011
Ignorance is Bliss?
Today, Erica had her yearly appointment with the neurosurgeon. Everything looked good. Her "hardware was in tact." (What an awful thing to say about some one's child).
I told the nurse about my neurologist's theory about the bleeding in my brain out of earshot of Erica. She, in turn, told the neurosurgeon. Basically, if there are genetic factors to the bleeding in my brain, there is nothing he can do for Erica or Elizabeth for that matter. The blood vessels in the brain are so tiny and numerous. He said that we could do an MRA (fancy MRI) to check for bleeding, but then what? We can do nothing to stop it, prevent it so why know?
Okay, this is my baby's brain we are talking about. I can barely accept there is nothing they can do for my brain, but for her? SHE IS 7 YEARS OLD! He told me like there was a mole on her back or and ear infection.
So, again, I have a choice. I can live in fear of her bleeding in the brain or go on and not fear. How much more of this will we have to take. It is like a horror movie that does not end an gets worse with each scene.
Theoretically it is a miracle that any of us are here, alive, functioning, moving and surviving, given the scientific odds. God's grace gives us the chance to be on Earth so we can yearn for our real home-heaven.
I told the nurse about my neurologist's theory about the bleeding in my brain out of earshot of Erica. She, in turn, told the neurosurgeon. Basically, if there are genetic factors to the bleeding in my brain, there is nothing he can do for Erica or Elizabeth for that matter. The blood vessels in the brain are so tiny and numerous. He said that we could do an MRA (fancy MRI) to check for bleeding, but then what? We can do nothing to stop it, prevent it so why know?
Okay, this is my baby's brain we are talking about. I can barely accept there is nothing they can do for my brain, but for her? SHE IS 7 YEARS OLD! He told me like there was a mole on her back or and ear infection.
So, again, I have a choice. I can live in fear of her bleeding in the brain or go on and not fear. How much more of this will we have to take. It is like a horror movie that does not end an gets worse with each scene.
Theoretically it is a miracle that any of us are here, alive, functioning, moving and surviving, given the scientific odds. God's grace gives us the chance to be on Earth so we can yearn for our real home-heaven.
Sunday, January 2, 2011
She is Right in More Ways Than One!
My daughter is 7 years old. When she was 5 she had a C1-C2 fusion. She told this story: " I met a girl yesterday. I told her that I had to have my head attached to my body. The girl said 'Wow'. My daughter continued. It's okay I am screwed now!" You have to laugh every once in a while!
Sunday, December 26, 2010
A Sigh is Just a Sigh...
Our family had a good Christmas. We ate too much; stayed up too long; made a mess; went to church; made cookies; saw family and friends and generally had a normal Christmas. It was glorious! I rode home in the back seat of our car with my son yesterday and he put his head on my shoulder and whispered, "Merry Christmas" with a sigh. It was the best gift ever to hear- that contented sigh.
I cherish contented sighs. I long to hear them. I want to create them, though I know I cannot. I do everything I can so that my kids will have a contented sigh. We all do if we think of it. A contented sigh means that all their needs are meet, physically and emotionally. The sigh means that they are met so abundantly, that satisfaction is putting them in a relaxed happy place. This is a place free of pain or worries. A thought that all is right with the world right now.
I just wish I could hit the pause button on that moment and others like them. I don't think I am the only one that does not hear contented sighs from those around me or makes them myself. Why is that? Why do I not sigh contentedly more often? I have many things in which to be grateful, but do I sit back and contemplate them and recognize when I am contented, satisfied, or happy?
No, I don't. Usually I am thinking about the next thing I need to think about or worry about. Worrying never produced one contented sigh.
I cherish contented sighs. I long to hear them. I want to create them, though I know I cannot. I do everything I can so that my kids will have a contented sigh. We all do if we think of it. A contented sigh means that all their needs are meet, physically and emotionally. The sigh means that they are met so abundantly, that satisfaction is putting them in a relaxed happy place. This is a place free of pain or worries. A thought that all is right with the world right now.
I just wish I could hit the pause button on that moment and others like them. I don't think I am the only one that does not hear contented sighs from those around me or makes them myself. Why is that? Why do I not sigh contentedly more often? I have many things in which to be grateful, but do I sit back and contemplate them and recognize when I am contented, satisfied, or happy?
No, I don't. Usually I am thinking about the next thing I need to think about or worry about. Worrying never produced one contented sigh.
Monday, December 6, 2010
A Fresh Perspective
Elizabeth is home from the hospital. She is stronger than she has been in a while. The work she did while on the physical rehab floor was amazing. Her endurance increased as well as her strength and her pain levels decreased. I think the hospitalization was a success.
However, one of the reasons we wanted her in the hospital is so that we could get all of her doctors to discuss the falling issue. Not all of the doctors were in the meeting, specifically her regular doctor, who called the meeting together; her neurosurgeon and her spine surgeon.
All of the other doctors said that she looked great, to which we agreed. They also said that they did not think her falling was due to the POTS (the heart issue). We also agreed that her POTS is being controlled with medicine. No falls occurred while she was in the hospital so they had no idea why she was falling.
The absence of the key doctors not withstanding, they had no theories, but even more important, no ideas on how to keep her safe. In fact, they suggested that she walks more places and more often. Is it just me, or does this sound crazy. The only places we have really let her walk are the YMCA, where she has fallen at least once and had to leave in a life squad; our house, where she has suffered concussions, torn hips and other damage; church where she has left in a life squad and they bought a backboard just for her and some friends houses where she has left in a life squad. Do you see a pattern? Oh, by the way, the reason she was restricted is based on their advice.
I asked, so if she falls in a store, what am I supposed to do? Just let her lie there a couple of hours so she can put all of her joints back into place? Honestly, I don't think these doctors understand real life. In theory, letting her walk more places sounds good, but in reality, it is crazy.
So... as a family we had to decide what to do on a daily basis. Our decision was to not live in fear. We cannot live our life fearful of the next time she falls. Fear is the opposite of faith. Fear puts us in prison and that is kind of what Elizabeth's life has been like for almost a year. We are going to let her walk more and go more places. We are going to do it safely and with supervision, but ultimately we have no choice.
We are not, however, going to give up trying to find out why she is falling. I think some of the recent falls can be attributed to her POTS and we will do everything in our power to keep her medication and water levels correct so she does not fall, but we need to know more about the instability.
She will go to a neurologist soon to check her brain stem. I do not think they will find any abnormalities, but it was suggested that this be done. We will also check in with her spinal surgeon in February. Hopefully this will give us enough time to rule all other possibilities out and make an informed decision. Despite what the doctors think, I do not want her to have the C1-C2 fusion. To me, the surgery would be of last resort.
All of these thoughts were going through our family as we brought her home last week. We were sad, frustrated and a little angry about the meeting. We were all discussing it when Erica said, "Elizabeth is home! Our whole family is in the same house. I cannot stop praising God!" When things look bleak, a fresh perspective is sometimes all you need!
However, one of the reasons we wanted her in the hospital is so that we could get all of her doctors to discuss the falling issue. Not all of the doctors were in the meeting, specifically her regular doctor, who called the meeting together; her neurosurgeon and her spine surgeon.
All of the other doctors said that she looked great, to which we agreed. They also said that they did not think her falling was due to the POTS (the heart issue). We also agreed that her POTS is being controlled with medicine. No falls occurred while she was in the hospital so they had no idea why she was falling.
The absence of the key doctors not withstanding, they had no theories, but even more important, no ideas on how to keep her safe. In fact, they suggested that she walks more places and more often. Is it just me, or does this sound crazy. The only places we have really let her walk are the YMCA, where she has fallen at least once and had to leave in a life squad; our house, where she has suffered concussions, torn hips and other damage; church where she has left in a life squad and they bought a backboard just for her and some friends houses where she has left in a life squad. Do you see a pattern? Oh, by the way, the reason she was restricted is based on their advice.
I asked, so if she falls in a store, what am I supposed to do? Just let her lie there a couple of hours so she can put all of her joints back into place? Honestly, I don't think these doctors understand real life. In theory, letting her walk more places sounds good, but in reality, it is crazy.
So... as a family we had to decide what to do on a daily basis. Our decision was to not live in fear. We cannot live our life fearful of the next time she falls. Fear is the opposite of faith. Fear puts us in prison and that is kind of what Elizabeth's life has been like for almost a year. We are going to let her walk more and go more places. We are going to do it safely and with supervision, but ultimately we have no choice.
We are not, however, going to give up trying to find out why she is falling. I think some of the recent falls can be attributed to her POTS and we will do everything in our power to keep her medication and water levels correct so she does not fall, but we need to know more about the instability.
She will go to a neurologist soon to check her brain stem. I do not think they will find any abnormalities, but it was suggested that this be done. We will also check in with her spinal surgeon in February. Hopefully this will give us enough time to rule all other possibilities out and make an informed decision. Despite what the doctors think, I do not want her to have the C1-C2 fusion. To me, the surgery would be of last resort.
All of these thoughts were going through our family as we brought her home last week. We were sad, frustrated and a little angry about the meeting. We were all discussing it when Erica said, "Elizabeth is home! Our whole family is in the same house. I cannot stop praising God!" When things look bleak, a fresh perspective is sometimes all you need!
Sunday, November 21, 2010
Acceptance with Joy
Elizabeth leaves tomorrow for the hospital. We have to have an ambulance come and get her to take her down because she is still unable to sit up. She has been approved for a week stay. This means that she will be in for Thanksgiving. This is hard, but I think it is best to get her moving as quickly as possible.
The danger, in my mind, is that we will be able to get her up and moving, but the falling will continue. This was also on the mind of her doctor as we discussed the whole issue of Elizabeth's problems right now. We had taken a short break from this doctor when we were told by one of the orthopedic surgeons that she also had C1-C2 instability. He was not around when all of the fights took place about if she does or if she does not.
Where we left it is that we would wait. This doctor brought the subject up himself and said that he thinks that she has the instability. He wanted me to take her to her doctor to see if she did. I told me that she was found to have it. He said that the POTS alone could not be causing all of this falling. He also said that it is difficult to believe that her sister, mother and grandmother all have this issue and she does not.
His theory is that she is turning her head in a certain way causing her to pass out.
How am I going to make another decision to put another child through brain/spine surgery? The doctors are divided. If this surgery would occur, it would have to be in adult hospital.
She does not know about the neck issue right now. If you come from her perspective, she will probably not be able to walk and she will need this awful neck surgery to attach her head!
I have been praying very hard about all of this. The answer that I got the other day is three words, "Acceptance with Joy."
Really???! How am I supposed to have acceptance with joy? Do I just fake it? I can count my blessing and think it could be worse. I can thank God that there is a surgeon willing to do the surgery, but acceptance with joy...?
I am going to need His help with this one. I am going to need everyone's help with this one! I know what that surgery feels like. I do not know what it is like to know that walking is not going to be easy or even possible all of the time. She would also know that many more surgeries are likely.
I am not at the acceptance with joy right now. I am mad, frustrated and confused. Lord help me to see your Goodness in this.
The danger, in my mind, is that we will be able to get her up and moving, but the falling will continue. This was also on the mind of her doctor as we discussed the whole issue of Elizabeth's problems right now. We had taken a short break from this doctor when we were told by one of the orthopedic surgeons that she also had C1-C2 instability. He was not around when all of the fights took place about if she does or if she does not.
Where we left it is that we would wait. This doctor brought the subject up himself and said that he thinks that she has the instability. He wanted me to take her to her doctor to see if she did. I told me that she was found to have it. He said that the POTS alone could not be causing all of this falling. He also said that it is difficult to believe that her sister, mother and grandmother all have this issue and she does not.
His theory is that she is turning her head in a certain way causing her to pass out.
How am I going to make another decision to put another child through brain/spine surgery? The doctors are divided. If this surgery would occur, it would have to be in adult hospital.
She does not know about the neck issue right now. If you come from her perspective, she will probably not be able to walk and she will need this awful neck surgery to attach her head!
I have been praying very hard about all of this. The answer that I got the other day is three words, "Acceptance with Joy."
Really???! How am I supposed to have acceptance with joy? Do I just fake it? I can count my blessing and think it could be worse. I can thank God that there is a surgeon willing to do the surgery, but acceptance with joy...?
I am going to need His help with this one. I am going to need everyone's help with this one! I know what that surgery feels like. I do not know what it is like to know that walking is not going to be easy or even possible all of the time. She would also know that many more surgeries are likely.
I am not at the acceptance with joy right now. I am mad, frustrated and confused. Lord help me to see your Goodness in this.
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