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Wednesday, May 28, 2014
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...
Wednesday, May 14, 2014
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Tuesday, May 13, 2014
Changes...again!
It is rare that Kerstin has a visit to Children's of Alabama without something changing. Change is good, right? I skeptically say "Yes", when things seem to be going in a good direction. So, we were back, for another follow up, our second trip in less than a month. Cannot forget that she has another...in less than a month.
This was a follow up with her pediatric surgeon...g-tube follow up. Beautiful day, beautiful weather (a bit warm, already). I must say, that I am very thankful for safe travels to and from. I told my sister on the way up yesterday, that it seems almost scary that I can drive those 124 miles one way and it seems like nothing now that it's been done so many times. The things we do for our little ones.
Happy to report that Kerstin is continuing to gain weight. In fact, she has gained so much that we had to see the nutritionist again to make more changes to her feeding plan and schedule.
Her current weight is 72.38 lbs!!! March 28, 2013 before her g-tube surgery, she was only 34 lbs! I have previously vowed to myself, that Kerstin was NOT getting a feeding tube! I had heard so many stories from other parents along the way, stories I won't even share.
At her appointment yesterday, I realized that this surgery has saved my daughter's life. I can't remember the speech therapists name that assisted with her swallow study March 25, 2013, but I'm thankful she called me and calmly talked me into coming back inside the hospital to have her admitted!
I was so scared and couldn't see for the tears that filled my eyes but, I'm glad we turned around! I know her doctor, we see him every six months. Dr. Martin was so patient and so calm with this antsy, nervous and confused mom, that he asked if I had questions and actually stood there while I rambled through questions. I was assured that we would not leave the hospital before I had information and training. That training came in the form of pop-ups on the room TV and one on one with his nurse.
Kerstin has gained so that her feeding tube was getting too small so she had to have a larger one. She went from 14 Fr/1.2 cm to a 14 Fr/1.5 cm tube. No, I have not changed a tube yet, it still seems a bit odd and uncomfortable to me to see that little "unnatural" hole in her little belly! But again, I'm thankful that I have sister that is happy to put her nursing skills to work and change them for me.
Now, to the feedings, her overnight feeds have gone down from 300 mL over 10 hours to 192 mL over 8 hours. Her water intake is gone up from 60 mL per bolus to 120 mL. Her nutritionist suggested the new schedule/ rate change since she has gained weight, and needs to maintain where she is for a while. She mentioned that it is somewhat unnatural to eat while you're asleep and that is when your weight is gained. I think she will eventually work up to not needing the pump at all overnight. Fingers crossed! So, for now, she will have a very wacky schedule for a while. One that I will have to get very used to. As with everything we're gone through and had to endure, we always conform.
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*Products received for free from Influenster, so that I could try and review them.*
This was a follow up with her pediatric surgeon...g-tube follow up. Beautiful day, beautiful weather (a bit warm, already). I must say, that I am very thankful for safe travels to and from. I told my sister on the way up yesterday, that it seems almost scary that I can drive those 124 miles one way and it seems like nothing now that it's been done so many times. The things we do for our little ones.
Happy to report that Kerstin is continuing to gain weight. In fact, she has gained so much that we had to see the nutritionist again to make more changes to her feeding plan and schedule.
Her current weight is 72.38 lbs!!! March 28, 2013 before her g-tube surgery, she was only 34 lbs! I have previously vowed to myself, that Kerstin was NOT getting a feeding tube! I had heard so many stories from other parents along the way, stories I won't even share.
At her appointment yesterday, I realized that this surgery has saved my daughter's life. I can't remember the speech therapists name that assisted with her swallow study March 25, 2013, but I'm thankful she called me and calmly talked me into coming back inside the hospital to have her admitted!
I was so scared and couldn't see for the tears that filled my eyes but, I'm glad we turned around! I know her doctor, we see him every six months. Dr. Martin was so patient and so calm with this antsy, nervous and confused mom, that he asked if I had questions and actually stood there while I rambled through questions. I was assured that we would not leave the hospital before I had information and training. That training came in the form of pop-ups on the room TV and one on one with his nurse.
Kerstin has gained so that her feeding tube was getting too small so she had to have a larger one. She went from 14 Fr/1.2 cm to a 14 Fr/1.5 cm tube. No, I have not changed a tube yet, it still seems a bit odd and uncomfortable to me to see that little "unnatural" hole in her little belly! But again, I'm thankful that I have sister that is happy to put her nursing skills to work and change them for me.
Now, to the feedings, her overnight feeds have gone down from 300 mL over 10 hours to 192 mL over 8 hours. Her water intake is gone up from 60 mL per bolus to 120 mL. Her nutritionist suggested the new schedule/ rate change since she has gained weight, and needs to maintain where she is for a while. She mentioned that it is somewhat unnatural to eat while you're asleep and that is when your weight is gained. I think she will eventually work up to not needing the pump at all overnight. Fingers crossed! So, for now, she will have a very wacky schedule for a while. One that I will have to get very used to. As with everything we're gone through and had to endure, we always conform.
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| Received some great products in the #UnivoxBox |
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| One of those products used to write a note to my HERO! #PenItFFwd |
*Products received for free from Influenster, so that I could try and review them.*
More to come...
Wednesday, May 7, 2014
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Tuesday, May 6, 2014
Support!
I will tell anyone, Kerstin has so many moms and grandmas out there. I often think about "Lily Owens" from "The Secret Life of Bees". By the end of the book and movie, Lily has found so much support from her former housekeeper now friend and the Boatwright sisters, that she feels she is the luckiest girl in the world to have so many "moms". Kerstin has her beat!! It means so much to have so many caring women in our lives. Yesterday, I even posted on Facebook, how it means so much to receive invaluable support, advice and prayers. Post here. That means so much more when it comes from women, especially older women that truly understand what we younger women and moms are dealing with.
Kerstin has motherly/grand-motherly figures seems like wherever we go! She has an aunt, Regina, that will tell anyone that, "Mattisa gave birth to Kerstin but, I'm her mom!" She has been supportive in ways that could take a blog post or two to explain. Kerstin loves her T-Gina! I have another sister, Joan, she's Kerstin's and my go to for anything medical especially after hours. We love her for that, even though Kerstin seems to be annoyed by her sometimes. I know there's divine intervention when you least expect it. My sisters were lead into areas of higher learning because of their interest but also because it would be needed in our family. I am eternally grateful for them and their knowledge. When I don't know what to say or do in some situations, they step right in and on time!
When Kerstin has gone to school over the years, there are so many motherly figures. Not all the women we've encountered have been kind but, this is NOT about them. We have had some tell me on cold days, "Make sure you have Kerstin wrapped up." Or, "Make sure Kerstin has on her hat and gloves..." I've even been called some days with her at school moms telling me "Don't bring Kerstin to school, there seems to be a virus going around."
Taking her to therapy, her therapist know that she's going to have her nails polished and when she doesn't, I get "Why aren't her nails done?" Leaving me to explain that I've usually taken the polish off late the night before and just hadn't re-polished yet.
Cannot forget about her "grandmas" and "aunts", that are not even related...my moms friends, always asking how their baby is doing. They always send encouraging words via my mom to me, "Tell Mattisa to hang in there and be strong." Kerstin has love from every corner of this country it seems, from California, to Texas, to Michigan, to Virginia and beyond. THANK YOU, from our corner in Alabama!
All of your support does not go unnoticed! It means more than I can began to explain!
So, to all you supportive women in our lives:
THANK YOU,
Kerstin has motherly/grand-motherly figures seems like wherever we go! She has an aunt, Regina, that will tell anyone that, "Mattisa gave birth to Kerstin but, I'm her mom!" She has been supportive in ways that could take a blog post or two to explain. Kerstin loves her T-Gina! I have another sister, Joan, she's Kerstin's and my go to for anything medical especially after hours. We love her for that, even though Kerstin seems to be annoyed by her sometimes. I know there's divine intervention when you least expect it. My sisters were lead into areas of higher learning because of their interest but also because it would be needed in our family. I am eternally grateful for them and their knowledge. When I don't know what to say or do in some situations, they step right in and on time!
When Kerstin has gone to school over the years, there are so many motherly figures. Not all the women we've encountered have been kind but, this is NOT about them. We have had some tell me on cold days, "Make sure you have Kerstin wrapped up." Or, "Make sure Kerstin has on her hat and gloves..." I've even been called some days with her at school moms telling me "Don't bring Kerstin to school, there seems to be a virus going around."
Taking her to therapy, her therapist know that she's going to have her nails polished and when she doesn't, I get "Why aren't her nails done?" Leaving me to explain that I've usually taken the polish off late the night before and just hadn't re-polished yet.
Cannot forget about her "grandmas" and "aunts", that are not even related...my moms friends, always asking how their baby is doing. They always send encouraging words via my mom to me, "Tell Mattisa to hang in there and be strong." Kerstin has love from every corner of this country it seems, from California, to Texas, to Michigan, to Virginia and beyond. THANK YOU, from our corner in Alabama!
All of your support does not go unnoticed! It means more than I can began to explain!
So, to all you supportive women in our lives:
"I don't tell you often enough how much we appreciate the time and the care and the love you give us. But today we want you to know how special you are and that we will always remember everything you've done for US!"
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| We appreciate YOU!! |
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