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!
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