May is Prader Willi Syndrome Awareness Month!
As
you know, our sweet daughter Clover was diagnosed with Prader Willi
Syndrome shortly after she was born. At that time, we experienced a lot
of different emotions...devastation, fear, frustration, anger, sadness,
and the list goes on. We felt alone. We felt like there was no way
anyone could understand what we were going through....what Clover was
going through. We worried about her future and all the things she may
never be able to do.
Things are so very different now.
Clover
is 8 months old and amazes us every single day. She brings so much joy
into our lives. She is learning new things every day, she loves her
brother, she is happy, she is silly and always has us laughing, she is
smart, she is strong and she inspires me everyday to be a better person.
We
have met other PWS families who have become such a wonderful support
system for us. I can't help but feel instantly connected with these
families. We have a bond that is very special and I am so very thankful
for these people in my life.
Since becoming a
mother, my life has a new purpose...and that is to do all I can to help
Clover and Henry's lives be the best they can be. Raising awareness for
Prader Willi Syndrome is just one thing I can do to make a difference
for Clover, our family and others with PWS.
Showing posts with label PWS. Show all posts
Showing posts with label PWS. Show all posts
May 3, 2013
Feb 28, 2013
Rare Disease Day
Did you know that today is Rare Disease Day??
It's a day (held the last day of February) dedicated to raising awareness for rare diseases and improving access to treatment and medical representation for individuals with rare diseases and their families.
There are thousands of rare diseases and disorders, one of them being Prader Willi Syndrome.
Help spread awareness and help us find a cure!!
It's a day (held the last day of February) dedicated to raising awareness for rare diseases and improving access to treatment and medical representation for individuals with rare diseases and their families.
There are thousands of rare diseases and disorders, one of them being Prader Willi Syndrome.
Help spread awareness and help us find a cure!!
Dec 10, 2012
PWS
So.....Clover has Prader-Willi Syndrome. Everyday I am reminded of this. And everyday it breaks my heart.
I wish more than anything that there was a cure for this awful syndrome. I have never wanted anything so badly in my life.
It's a hard syndrome to explain. In fact, if I am going to be honest, I really dread explaining it to others. No one "gets it." There is just so much to it, that it is impossible to explain it all in a two minute casual conversation.
When I learned of Clover's diagnosis, I was in Billings alone. Curtis was in Thermop at work. I was sitting with Clover in the NICU when the doctor came up and said, "we have a diagnosis." My heart sank because I knew we were waiting on results from three different tests to come back and I was hoping that all three would come back negative. If we indeed had a diagnosis, then that meant that one of the tests came back positive. The doctor stood next to me and out came the words, "Clover has Prader Willi Syndrome." I just kind of sat there in a daze and listened to all the doctor had to say about it. I stayed calm and tried to ask intelligent questions....tried to act okay with it...tried to act like my world wasn't crashing down around me.
When the doctor left, I stared at my sweet baby girl, held her little hands, rubbed her round little head full of strawberry blond hair, kissed her round cheeks and then it was time for me to share the news with her daddy. I called and shared the news with Curtis. I tried to remember everything the doctor had said. We were both kind of quiet as the news sank in. "What does this mean?" "What does the future hold for her?" "How are we going to do this?" We had a lot of questions.
When I hung up the phone I completely broke down. I burst into tears and cried and cried. I didn't want it all to be real. I tried to imagine that the whole day was all just a dream. That she didn't really have Prader Willi Syndrome. That the doctor never said those words.
After learning of the diagnosis, I had to wait three days to see Curtis. Those few days were some of the toughest days of my life. I probably shed a million tears those few days. When I held Clover, my eyes would fill up with tears. When a nurse gave me a hug, I would break down. If someone so much as looked at me, I would lose it. My heart was broken into a billion little pieces and I didn't know what to do.
It was never the "why me" that I felt. It was the "why her?" She's so wonderful and so innocent and so pure....why does she have to go through this?
My heart is still broken, and I still have my moments of weakness. But I have hope. I hope and pray for a cure one day. I hope and pray that Clover won't have to feel hungry for the rest of her life. I hope and pray that she will be happy and have a wonderful life. She has already brought more joy into my life than I ever thought possible.
I know that we were meant to have Clover. It seems like she has been ours forever....even though it's just been a few months. It seems like a part of her has always been with us. She was meant for us and she was meant to have a little brother. As much as I wish that Prader Willi Syndrome didn't exist, I have to trust that God has a plan for us and that life for our little family is happening exactly as it should.
I wish more than anything that there was a cure for this awful syndrome. I have never wanted anything so badly in my life.
It's a hard syndrome to explain. In fact, if I am going to be honest, I really dread explaining it to others. No one "gets it." There is just so much to it, that it is impossible to explain it all in a two minute casual conversation.
When I learned of Clover's diagnosis, I was in Billings alone. Curtis was in Thermop at work. I was sitting with Clover in the NICU when the doctor came up and said, "we have a diagnosis." My heart sank because I knew we were waiting on results from three different tests to come back and I was hoping that all three would come back negative. If we indeed had a diagnosis, then that meant that one of the tests came back positive. The doctor stood next to me and out came the words, "Clover has Prader Willi Syndrome." I just kind of sat there in a daze and listened to all the doctor had to say about it. I stayed calm and tried to ask intelligent questions....tried to act okay with it...tried to act like my world wasn't crashing down around me.
When the doctor left, I stared at my sweet baby girl, held her little hands, rubbed her round little head full of strawberry blond hair, kissed her round cheeks and then it was time for me to share the news with her daddy. I called and shared the news with Curtis. I tried to remember everything the doctor had said. We were both kind of quiet as the news sank in. "What does this mean?" "What does the future hold for her?" "How are we going to do this?" We had a lot of questions.
When I hung up the phone I completely broke down. I burst into tears and cried and cried. I didn't want it all to be real. I tried to imagine that the whole day was all just a dream. That she didn't really have Prader Willi Syndrome. That the doctor never said those words.
After learning of the diagnosis, I had to wait three days to see Curtis. Those few days were some of the toughest days of my life. I probably shed a million tears those few days. When I held Clover, my eyes would fill up with tears. When a nurse gave me a hug, I would break down. If someone so much as looked at me, I would lose it. My heart was broken into a billion little pieces and I didn't know what to do.
It was never the "why me" that I felt. It was the "why her?" She's so wonderful and so innocent and so pure....why does she have to go through this?
My heart is still broken, and I still have my moments of weakness. But I have hope. I hope and pray for a cure one day. I hope and pray that Clover won't have to feel hungry for the rest of her life. I hope and pray that she will be happy and have a wonderful life. She has already brought more joy into my life than I ever thought possible.
I know that we were meant to have Clover. It seems like she has been ours forever....even though it's just been a few months. It seems like a part of her has always been with us. She was meant for us and she was meant to have a little brother. As much as I wish that Prader Willi Syndrome didn't exist, I have to trust that God has a plan for us and that life for our little family is happening exactly as it should.
Oct 27, 2012
Little Miss Clover....
When Clover was first flown to the NICU in Billings, we, along with the doctors and nurses thought she might be there until the end of the week. Forty-six days later, we are finally HOME....and we couldn't be happier!!
A lot went on during our stay in the NICU. At first, we all just thought Clover was tired and needed to rest and build up some strength so she could eat on her own. After a week of "resting," the doctor sat us down and told us that she no longer thought it was just a matter of "getting some rest," but that there might be something more going on. Scary things were mentioned....things such as Spinal Muscular Atrophy, Myotonic Dystrophy, Central Core Disease and a bunch of a other things we had never heard of.
Clover was seen by many different specialists including the neonatologist, cardiologist, neurologist and geneticists. She was visited several times a week by the occupational and physical therapist....she was fed through a feeding tube, put on oxygen, had an MRI, echo-cardio gram, lots of blood work, a surgery (to put in a feeding tube that goes directly into her tummy - g-tube, which she still has) and eventually a diagnosis.
At 33 days old, Clover was diagnosed with what is called Prader-Willi Syndrome (also known as PWS). It is a rare and complex genetic disorder caused by an abnormality on chromosome 15. In infancy, characteristics include weak muscle tone, feeding and breathing difficulties, poor growth and delayed development. Beginning sometime in childhood, children with PWS develop an insatiable appetite. Their brain never signals to them that they are full and therefore they have a constant feeling of hunger....like "I am starving and need to eat!" kind of hunger....all day....every day. These children are not able to metabolize their food normally and therefore their food intake must be monitored at all times. They are hungry and want nothing more than to eat, yet they can't. Just one episode of overeating could be life threatening for these kiddos. No one wants to see their child go hungry.
The list of other possible symptoms and characteristics associated with PWS goes on and on and one could spend hours and hours on the internet researching them....which we have....but that just leads to lots and lots of tears, worry, and exhaustion.
Learning that our sweet, perfect daughter has a life-threatening disorder (which has no cure) was heartbreaking....beyond heartbreaking...there is really no way to adequately describe it. Heartbreak and sadness along with a million other emotions sneak up on us daily.
During one of my days of endless google searches on Prader-Willi, I came across this youtube video. Seeing real people and real families care for real children with PWS helped me tremendously. It helped me to realize that things were going to be okay and that we were going to be able to do this.
The best advice that our doctor gave us was to just live for today....do what needs to be done today and don't worry too much about what needs to be done tomorrow. Don't miss out on things happening right now by worrying about what things might happen later.
We are so happy to be home with our sweetie-pie. While I miss the wonderful people I met in the NICU, nothing beats being in our own home together as a family. Clover has already brought so much joy into our home and into our lives. We can't get over how cute she is. We still just stare at her all day long. She is starting to smile a lot and even gave us a little giggle once. She is the light of our lives and we love her to pieces!!
If you are ever looking to donate to a good cause, please consider these organizations to help raise funds to further research on PWS.
A lot went on during our stay in the NICU. At first, we all just thought Clover was tired and needed to rest and build up some strength so she could eat on her own. After a week of "resting," the doctor sat us down and told us that she no longer thought it was just a matter of "getting some rest," but that there might be something more going on. Scary things were mentioned....things such as Spinal Muscular Atrophy, Myotonic Dystrophy, Central Core Disease and a bunch of a other things we had never heard of.
Clover was seen by many different specialists including the neonatologist, cardiologist, neurologist and geneticists. She was visited several times a week by the occupational and physical therapist....she was fed through a feeding tube, put on oxygen, had an MRI, echo-cardio gram, lots of blood work, a surgery (to put in a feeding tube that goes directly into her tummy - g-tube, which she still has) and eventually a diagnosis.
At 33 days old, Clover was diagnosed with what is called Prader-Willi Syndrome (also known as PWS). It is a rare and complex genetic disorder caused by an abnormality on chromosome 15. In infancy, characteristics include weak muscle tone, feeding and breathing difficulties, poor growth and delayed development. Beginning sometime in childhood, children with PWS develop an insatiable appetite. Their brain never signals to them that they are full and therefore they have a constant feeling of hunger....like "I am starving and need to eat!" kind of hunger....all day....every day. These children are not able to metabolize their food normally and therefore their food intake must be monitored at all times. They are hungry and want nothing more than to eat, yet they can't. Just one episode of overeating could be life threatening for these kiddos. No one wants to see their child go hungry.
The list of other possible symptoms and characteristics associated with PWS goes on and on and one could spend hours and hours on the internet researching them....which we have....but that just leads to lots and lots of tears, worry, and exhaustion.
Learning that our sweet, perfect daughter has a life-threatening disorder (which has no cure) was heartbreaking....beyond heartbreaking...there is really no way to adequately describe it. Heartbreak and sadness along with a million other emotions sneak up on us daily.
During one of my days of endless google searches on Prader-Willi, I came across this youtube video. Seeing real people and real families care for real children with PWS helped me tremendously. It helped me to realize that things were going to be okay and that we were going to be able to do this.
The best advice that our doctor gave us was to just live for today....do what needs to be done today and don't worry too much about what needs to be done tomorrow. Don't miss out on things happening right now by worrying about what things might happen later.
We are so happy to be home with our sweetie-pie. While I miss the wonderful people I met in the NICU, nothing beats being in our own home together as a family. Clover has already brought so much joy into our home and into our lives. We can't get over how cute she is. We still just stare at her all day long. She is starting to smile a lot and even gave us a little giggle once. She is the light of our lives and we love her to pieces!!
If you are ever looking to donate to a good cause, please consider these organizations to help raise funds to further research on PWS.
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