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Wednesday, June 25, 2014
Monday, June 16, 2014
Kerstin: Unplugged
So, something new on our g-tube journey! Over the weekend, I woke up to a big shock. Lately, I've been trying to wake up with bolus syringe and water in hand to be at her side before the pump beeps at 5:30 a.m. Well, Saturday morning I pull her covers back and Pediasure is everywhere!!!! The medicine port on her extension set is open. I have no idea how much she had eaten over night. I am frantic! I went ahead with her water flush and disconnected the extension that was covered in super sticky Pediasure.
Apparently, Kerstin managed to open the port on her MIC-Key set. The only thing I can think of is the fact that she has been moving around in her sleep a lot lately. I am very thankful for that! Also apparent, I need to make sure that there is a pillow over the line that come from the bag to the extension.
I told my sisters that I knew that the med port was closed because I always hold it down when I'm connect her pump line. I am so happy that it was the entire button she managed to pull open or out. I think it's safe to say, we've had an interesting weekend...we are on a journey. I'm growing with Kerstin!
More to come...
Apparently, Kerstin managed to open the port on her MIC-Key set. The only thing I can think of is the fact that she has been moving around in her sleep a lot lately. I am very thankful for that! Also apparent, I need to make sure that there is a pillow over the line that come from the bag to the extension.
I told my sisters that I knew that the med port was closed because I always hold it down when I'm connect her pump line. I am so happy that it was the entire button she managed to pull open or out. I think it's safe to say, we've had an interesting weekend...we are on a journey. I'm growing with Kerstin!
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| This show the extension set. Med port is what she opened!! |
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| MIC-Key or g-tube |
More to come...
Wednesday, June 11, 2014
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Wednesday, June 4, 2014
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Wednesday, May 28, 2014
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Tuesday, May 20, 2014
Life Expectancy...Do you wonder? Do you ask?
This past week has been interesting, to say the least. In one of my classes, the discussion of "Life Expectancy" came up when we were talking about chromosomal disorders. My instructor posed this statement and question to the class:
" It is natural to want to know the life expectancy of the child after the prenatal testing or diagnosis after birth? I think this is interesting, because in all honesty we never know anyone's real life expectancy. Ok yes, there is the standard life expectancy for any person born that is issued by scientist/ physicians. But in reality, it has come to mean very little in my opinion. I say this because when I watch the news I hear of young children, teens, and young adults that die everyday from things other than medical issues. Yes, the disorder would be a factor in how long the child may live, but in this day and time there are so many other factors, that can and cannot be controlled, that affect life expectancy, that I feel the life expectancy based on a disorder doesn't mean much at all." (Crawford, 2014)
The discussion and the events following, really made me think! Is it necessary for me to ask, do I really want to know? My response in the class was that although Kerstin does not have a chromosomal disorder, she is diagnosed with Cerebral Palsy as well as Epilepsy (often reported in chromosomal disorders but it is not one alone). I have never asked doctors about "life expectancy", none of the parents that I've come into contact with along this journey has ever talked about it. They may have asked their child's doctor but it is not a common topic.
The talk of "life expectancy" never came up, even during the many surgeries Kerstin has undergone. Her last surgery was intense, she would need more anesthesia, and would be under for well over 4 hours, which meant it was 9 hours before I saw her. That was scary yet, survival and expectancy never crossed my mind.
During this discussion, I also stated that I am always so thrilled when I seen teenagers, adults and seniors with Cerebral Palsy and other abilities. I see hope! I see fight! I see encouragement! We can listen to doctors and other scientists and we can take test after test...no one truly knows their "life expectancy". Looking at genetics, my grandmother was in her 90's when she passed away a few years ago, one can only hope to reach that. Like my instructor stated, people unexpectedly die everyday. One statement I'll never forget from my Partners in Policymaking course; having a disability can happen to anyone and at anytime, people aren't always born with a different ability...sometimes it happens.
So, just yesterday, I was feeling really bad with a stomach virus. I could barely hold my head up after staying in the bathroom most of the night and morning. I had texted my sister and told her that I was not feeling well and needed to get some Ginger Ale and Powerade, she told me that she was going to get the items for me and that she would get Kerstin and keep her for the day for me. I was so thankful for that. Watching my daughter leave with my sister bought tears to my eyes! My stomach was hurting so much, I was so sleepy and needed that help at that moment. I couldn't help but think about "life expectancy" once again.
With no guarantees and no certainty of how long...I could easily leave this earth before my daughter! What then? That scene I just saw leaving our home, is what I deeply believe would happen. I truly believe that my sister would step right in for my daughter! That's what I want! This is really hard to write because I am the only parent involved in Kerstin's life. So life expectancy is not something I am going to dwell on. I want to live, enjoy life and be all that I'm able to be for Kerstin!
Crawford, Adrianne, 2014. Life Expectancy.
" It is natural to want to know the life expectancy of the child after the prenatal testing or diagnosis after birth? I think this is interesting, because in all honesty we never know anyone's real life expectancy. Ok yes, there is the standard life expectancy for any person born that is issued by scientist/ physicians. But in reality, it has come to mean very little in my opinion. I say this because when I watch the news I hear of young children, teens, and young adults that die everyday from things other than medical issues. Yes, the disorder would be a factor in how long the child may live, but in this day and time there are so many other factors, that can and cannot be controlled, that affect life expectancy, that I feel the life expectancy based on a disorder doesn't mean much at all." (Crawford, 2014)
The discussion and the events following, really made me think! Is it necessary for me to ask, do I really want to know? My response in the class was that although Kerstin does not have a chromosomal disorder, she is diagnosed with Cerebral Palsy as well as Epilepsy (often reported in chromosomal disorders but it is not one alone). I have never asked doctors about "life expectancy", none of the parents that I've come into contact with along this journey has ever talked about it. They may have asked their child's doctor but it is not a common topic.
The talk of "life expectancy" never came up, even during the many surgeries Kerstin has undergone. Her last surgery was intense, she would need more anesthesia, and would be under for well over 4 hours, which meant it was 9 hours before I saw her. That was scary yet, survival and expectancy never crossed my mind.
During this discussion, I also stated that I am always so thrilled when I seen teenagers, adults and seniors with Cerebral Palsy and other abilities. I see hope! I see fight! I see encouragement! We can listen to doctors and other scientists and we can take test after test...no one truly knows their "life expectancy". Looking at genetics, my grandmother was in her 90's when she passed away a few years ago, one can only hope to reach that. Like my instructor stated, people unexpectedly die everyday. One statement I'll never forget from my Partners in Policymaking course; having a disability can happen to anyone and at anytime, people aren't always born with a different ability...sometimes it happens.
So, just yesterday, I was feeling really bad with a stomach virus. I could barely hold my head up after staying in the bathroom most of the night and morning. I had texted my sister and told her that I was not feeling well and needed to get some Ginger Ale and Powerade, she told me that she was going to get the items for me and that she would get Kerstin and keep her for the day for me. I was so thankful for that. Watching my daughter leave with my sister bought tears to my eyes! My stomach was hurting so much, I was so sleepy and needed that help at that moment. I couldn't help but think about "life expectancy" once again.
With no guarantees and no certainty of how long...I could easily leave this earth before my daughter! What then? That scene I just saw leaving our home, is what I deeply believe would happen. I truly believe that my sister would step right in for my daughter! That's what I want! This is really hard to write because I am the only parent involved in Kerstin's life. So life expectancy is not something I am going to dwell on. I want to live, enjoy life and be all that I'm able to be for Kerstin!
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| L O V E |
Crawford, Adrianne, 2014. Life Expectancy.
Thursday, May 15, 2014
It ain't easy...
I know there are some that may not be aware of many of the lyrics of now deceased rapper, Tupac Shakur given the image and reputation he had while alive. However, he had songs that inspired many and seemed to have spoke about their lives during that time. One of his songs with the same title of this post, "It Ain't Easy" seems so relevant to my life right now.
It ain't easy...proper grammar, it's not easy, being me! That is the hard truth! It is so hard sometimes to get out of bed to start a day that is not much different than the day before. Sometimes we dread the unpredictable moments that disturb our days. It may seem weird to actually want that. My smartphone dings as reminders every few hours. I know that my daughter has to have a certain medicine at a certain time. Along with that, it alerts me every three hours that it is time to give her a bolus. If you know her schedule, you know exactly what I'm doing at a certain time.
It ain't easy, to get the day started when I have to work with her spastic muscles and at times a very strong case of asymmetrical tonic neck reflex (ATNR) while attempting to dress her. How about on a cold winter morning and it takes over 7 minutes just to get a long sleeve shirt on her. The tug of war comes again when putting her in her safety belts once in the vehicle. You should see me standing there sometimes, rubbing her arm and singing to her just waiting and hoping she will relax soon. The resistance is so strong.
So, to all the doctors, teachers, annoying school administrators, therapists, whomever, understand it is NEVER intentional for us to be excessively late, it just happens that way. It ain't easy raising a child with special needs! It may appear controlled, if you only knew the half.
It ain't easy, but we do what we have to do because there is no other way! Just have a little patience with us!
More to come...
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