>>PWS AWARENESS MONTH - QUESTIONS

One last question to answer before the month is over....."Did you know Clover had PWS before she was born, and if so, were you hesitant on continuing with the adoption?"

I know this is something a lot of people wonder. No, we did not know that Clover would be born with PWS. We started the adoption process pretty early in the pregnancy, and signed the adoption paperwork when Clover was two days old. Clover was diagnosed with Prader-Willi Syndrome one month later.

When people find out Clover has PWS and also that she is adopted, their next question is usually, “did you know?” And when we say “no” their entire expression changes and it’s like they feel bad for us. As if we got “stuck” with this child that has a lot of medical problems. As if we didn’t get what we bargained for.

The truth is, we got WAY MORE than we bargained for. Clover is everything and a whole bunch more than we could have ever dreamed of. Anyone who has ever met Clover knows she is something pretty spectacular.

Clover captured my heart immediately. I loved Clover before she was even born, but when I first met her, and held her for the first time, that love I had for her magnified by a million…trillion…gazillion. My heart literally overflowed with love for her. I knew she was meant for us….. I truly believe with all my heart that we needed Clover, and Clover needed us, and she needed Henry and Henry needed her. We all needed each other. Looking back, I can see how every little (and big) thing fell into place in our lives exactly like it needed to so that I was one day able to meet Clover’s birth mom….and eventually welcome Clover into our lives.

I can’t imagine my life without Clover. PWS is just something she has….it’s not who she is. It does not define her. I’m thankful every day to be blessed with her. I would adopt her over again...and again and again!

Thank you SO MUCH for all of your questions this month. Thank you for letting me flood your newsfeed with information about PWS and our family. Thank you for joining in on raising awareness and working towards a cure for Prader-Willi Syndrome. Thank you for your kind words and your love and generosity.

>>PWS AWARENESS MONTH - QUESTIONS

Today I will be answering questions from two of my good friends. Lynsey asked, “Is PWS genetic? I had never heard of it before Clover, is it super rare?” and Stephanie asked a similar question, “Is PWS genetic? Would her birth parents have had any inclination that she might have it?”

PWS is a genetic disorder, in that it involves genes, however, it’s not necessarily hereditary nor does it run in a family (in most cases). 95% of the time, it is a total random occurrence….occurring in 1 out of every 15,000 births. So basically any of us have the same chances of having a child with PWS. However, in very rare cases (less than 5%), PWS is caused by an imprinting error (where the paternal 15th chromosome is present, but for some reason just not working) and that father has a 50/50 chance of having a child with PWS.

While PWS is very rare, it is actually the most common known genetic cause of life-threatening obesity in children. But like you Lynsey, I had never heard of it before the doctors told me they were testing Clover for it. This is why awareness is so important. If people don’t know about it, then they aren’t doing anything to support research. The more people who know, the more likely they are to give money to research and rally together to find a cure! And we desperately need a cure!!!

The next part of the question was if Clover’s birth parents would have known she might be born with PWS. No, there is no way they would have known. Her birth mom had a pretty uneventful pregnancy, and just like any expecting parent, we were all hoping for (and expecting) a healthy baby. We were all surprised about the diagnosis of Prader-Willi Syndrome (as are most families). There really isn't any clue or main symptom during pregnancy that screams, PRADER WILLI SYNDROME. Most families don't know anything is wrong until the baby is born and they are all just as shocked to learn about PWS. While there are some similar symptoms that moms experience during pregnancy (more amniotic fluid than normal and less fetal movement), none of these symptoms would make any doctor or parent think of PWS. Also, most PWS babies are born via c-section. They don't handle labor well and sometimes this can be the first real sign that something may be wrong with the baby. 

>>PWS AWARENESS MONTH - QUESTIONS

This question comes from my friend, Jill.  She asked,"Does PWS have any type of spectrum?"

Yes, PWS is a spectrum disorder and symptoms vary in severity and occurrence among individuals. While there are many similarities in individuals with PWS, there are also many differences and many degrees in the severity of symptoms (some mild, some severe). Some babies require oxygen, some don’t, some babies/kids/adults have sleep apnea, some don’t, some kids walk at 18 months, others don’t walk until they’re 4 years old, some kids really struggle with behavior issues, others don’t, some are major food seekers, others not so much. Some kids with PWS are more prone to seizures, and many have other disorders they are diagnosed with on top of PWS, such as OCD, autism and speech disorders.

I honestly don’t know where Clover is on the spectrum. I do feel like her low muscle tone is on the severe side. However, she is very smart and witty. She does have sleep apnea, but it seems to be improving as she continues to get stronger. We have been fortunate to not have to deal with seizures (yet), but Clover does seem to have some OCD tendencies where she will get “stuck” on something….usually playing with a tag on a blanket or a piece of string, etc. She could sit there for over an hour just zoning out playing with a tag in her fingers….and if I try to take it away, she throws a fit. I’ve heard similar stories with other young PWS kids. There have been times I have been worried about her behavior, but it’s hard to tell if it’s a typical toddler tantrum, or something more. I try not to read into things too much, but that is definitely easier said than done.

For many symptoms, we just won’t know how they will affect Clover until they present themselves…or not. I don’t know if she’ll be a food seeker. I’m not sure how she will do in school. I don’t know when she will hit the “hunger” phase. For now, I just try to give her all that she needs to be able to reach her full potential and hope (and pray really hard) for the best!!

>>PWS AWARENESS MONTH - QUESTIONS

Today's questions is from my good friend, Jill. She asked, "As you watch Clover and Henry grow up side-by-side, what are the day-to-day differences between them?"

When Clover was first born and in the NICU for two months, she was very, very floppy. She rarely moved, she never cried, and she only opened her eyes a handful of times. When Henry was born, I heard him cry right away. I remember holding him on my chest and he lifted his head clear up off of my body. I was absolutely, completely amazed! I think in my mind I didn't think babies could do that.....after all, Clover was 2 months old and still not lifting her head even an inch. So this was the first, real difference I noticed between the two of them. This and also their eating abilities. Since Henry was a preemie, he was fed through a feeding tube for 2 weeks, but after that, he LOVED his bottle and drank it right up, and often times even wanted more. Clover was so weak, she couldn't even eat from her bottle. We would try and try to feed her, but it was just too hard to suck and she would just get too tired. She was fed through her feeding tube for over a year.

Henry started walking at 10 months old, and now at 18 months old, he is RUNNING all over the place. He is climbing up on things, walking backwards, balancing on one leg, etc. At 20 months old, Clover is just starting to figure out how to army crawl, but after just a couple of pulls, she is worn out and resorts to rolling instead. She is still bearing very little weight on her legs. Their gross motor development still seems to be the biggest difference between them.

As far as day-to-day stuff, Clover gets a growth hormone shot every night before bed. This is an actual shot (with a needle) that we have to give her every day (I never imagined I would ever be able to give anyone a shot….let alone my own baby). She also gets several medications a day and is hooked up to oxygen at night. So, her nightly routine is a bit different than Henry’s. After shots, medicine and a bottle, I can put Clover right in her crib and she is totally fine with going to sleep. She has slept through the night entirely since the day she was born. Henry is not so easy. We change him, get him in his pj’s, he has his bottle, and when HE is ready, I can put him in his crib….but it often requires another diaper change, more milk in his bottle, running around, a story, hugs, more bottle, etc before he is okay with going to bed. And even then, he often wakes back up after a couple hours and wants something (usually a diaper change).

Clover also gets therapy three times a week.  On Tuesday she gets occupational therapy, Wednesdays is speech therapy and Thursdays she gets physical therapy.  Luckily, all three of our therapists are great and include Henry as much as they can.  They let him dig through their bags of toys and allow him to join in on all the therapy fun.


Their little personalities are both very different. Clover is very social (although she is starting to get a little more shy at first, but warms up quickly). She waves at everyone, yells at people from across the room, loves to interact with others, etc. She wants to be where the people are! Henry is more reserved, he is fine to just play with his toys and not really care what other people are doing. He likes to watch tv or do an activity (build blocks, color, etc), rather than be with people (he totally takes after me!). If we are sitting in a room with a bunch of people, Henry doesn’t want to sit on my lap….he wants to get down and wander around and explore. Clover on the other hand, she wants to be right up on my lap and in on the conversation with everyone. Who knows, maybe if Clover could walk, she would be out exploring too???

These are all the biggest differences I can think of. Other things include food and eating….we can’t eat in front of Clover or she goes crazy. Henry usually couldn't care less about the food. Also Henry can eat many foods that Clover can’t (or shouldn’t) eat.

Thanks so much for your question, Jill!  This was kind of a hard one to answer. We always notice their differences throughout the day, but when I had to actually list them and write them down, it was a lot harder than I thought it would be. Hopefully I answered it well enough!

>>PWS AWARENESS MONTH - QUESTIONS

Today's question comes from Heather...a very dear friend of mine. She asked, "Does Clover still sleep with oxygen or does she use a mask for sleep apnea?"

Clover still sleeps with oxygen. Her latest sleep study (back in March) still showed obstructive sleep apnea, which is common in people with PWS. Her apnea has improved though, so that is good news! She is now down to only 8 apnea episodes an hour (from 16 an hour last October).

It's really not a fun thing to have your child have sleep apnea. I can literally see Clover stop breathing while she is sleeping. It can be disturbing to watch! Luckily, we have a pulse ox machine that we hook Clover up to each night. This monitors his oxygen levels and heartrate. So, if she desats in the night (meaning her oxygen levels get too low), an alarm sounds. This gives me so much peace of mind at night....it's just nice to know that if anything were to happen with her in the night, the alarm would wake me up.

One thing you might not realize about having a child on oxygen at night is that they do NOT like to keep the nasal cannula in their nose....so they are pulling it out all night long. So....what happens when Clover pulls out her oxygen? She usually desats, then the alarm goes off, then I know she's pulled her oxygen off. Some nights she will do great and leave it on all night!! Other nights she pulls it off every hour....those are very long nights!

I'm not sure how much longer Clover will need to wear oxygen at night. It's possible that in the future, the doctors will switch her to a bi-pap mask. Only time will tell I guess. I'm hoping that she continues to get stronger and that her sleep apnea goes away!!

>>PWS AWARENESS MONTH - QUESTIONS

On behalf of Prader-Willi Syndrome Awareness Month, I am answering your questions about PWS. Today's question is from a very good friend, Jennifer P. She asked, "can you tell if Clover is starting to have the hunger problems yet?"

Clover hasn't reached the "hunger" phase of PWS yet....also known as hyperphagia. For those that don't know, a sad symptom of PWS is a constant feeling of hunger....the kind of hunger you would feel if you haven't eaten for days....and they feel this way even after eating a large meal.

This stage of PWS happens at different times for different kids. Some can enter this stage as young as 2, while others may be 12 years old and still able to feel full. It's one of those thing as a PWS parent that is ALWAYS on your mind....When will this happen? Is she there yet? Oh no, she's acting hungry, is this it?

Even though Clover isn't in the hunger stage yet, she is very, very interested in food....almost to the point that it causes her anxiety. I know a lot of people tell me "oh, all kids her age are like that with food." But, it's different with Clover. Her brain simply works differently. We can't have any food left out on the cupboards or on the table, and we most definitely can never eat in front of Clover unless she is eating too. Sometimes even the presence of food on the table during dinner causes her too much stress (even if she already has food on her tray).

Everyday I hope and pray that a cure is found before Clover ever has to feel like she is starving! It sounds mean to tell a hungry child that they can't eat, but that is simply the reality of PWS. We have to protect them. For those kids in the hyperphagia stage, if they are left unattended, they can literally eat themselves to death....and what that means is that they eat to the point that their stomach ruptures. It is a very scary and real thing. 

>>PWS AWARENESS MONTH - QUESTIONS

As part of Prader-Willi Syndrome Awareness Month, I encouraged my facebook friends to ask me their questions regarding PWS.  Sometimes it feels uncomfortable to ask the questions we have about people who might be "different."  We worry about offending them or seeming insensitive.  The truth is, I love when people ask questions about Clover and PWS.  It's already lonely enough having a child with special needs, but when people don't want to talk to you or get to know you or your child, it can seem all the more lonely.  I always, always appreciate questions.....it makes me feel that you  really care and want to understand where we're coming from....or why we do what we do....or worry about the things we worry about.

I will share the questions I received on facebook and my answers here on the blog.

The first question came from my awesome cousin, Emily. She asked, "What is the whole prognosis for precious children with PWS?"

This is a tough question to answer. To be honest, it's hard to know what the future holds for Clover. And I don't mean that in a negative or depressing way. Kids these days are being diagnosed with PWS at such an early age (Clover was one month old, but others are even diagnosed within a few days of birth). Because of the early diagnosis, kids are starting growth hormone right away, they are starting therapy right away, and good, healthy eating habits are being established almost immediately. With all of these things in place, the sky is seriously the limit for our kids. Clover will crawl, eventually, and she will walk, eventually. She will also, run, play with friends, and maybe even ride a 2-wheel bike one day (if not, no biggie!).

The severity of symptoms differs from kid to kid, and different stages happen at different ages. For example, some kids experience the "hunger" phase at age 4....while others it may not happen until age 12. Some families lock their fridge and cabinets and others don't. We don't know what we will do because we are simply not there yet and don't know what will work best for Clover and our family.

IQ varies from kid to kid. Some kids are in resources classes at school, while others are in a regular classroom, with or without an aid. Some struggle with behavior issues more than others. Some adults are able to live a little more independently than others (I don't know that any PWS adult truly lives on their own??). Some adults live at home with their families, while others live in group homes. I have one PWS friend who lives with her boyfriend in a separate part of the family home. Some kids go to college, some don't. I also have a friend who has a daughter with PWS who has her driver's license!

Most individuals with PWS are infertile, however, not all (I have heard of some PWS women having kids). Life expectancy can be normal if weight and other health factors are controlled.

So as you can see....it's really hard to know exactly what Clover will be able to do and what things might be more of a challenge. It's all just a wait and see type thing. We chose to just hope for the very best and to provide her with all of the supports possible so she can live to her full potential!   

>>PWS AWARENESS MONTH

When I first learned of Clover's diagnosis of Prader-Willi Syndrome, of course the first thing I did was turn to google to learn all I could about it. That was a mistake. If you want to have the crap scared out of you and fear the future more than you ever have....then google PWS.
 
Clover was 4 months old when I first saw another child with PWS.  I was very anxious and I didn't know what to expect.  We attended a PWS clinic at Denver Children's Hospital and following the clinic, they held a little lunch get-together for all of the families.  I remember wondering what it was going to be like.  Would they all be really overweight?  Would they all be having tantrums?  Would they all be going nuts over the food?  I really didn't know what to expect, but the information I had read online about PWS, led me to believe I would walk into a room full of overweight, tantrum-throwing, food-seeking kids. 

I hesitantly walked into the room and was delighted to find well behaved, smart, beautiful kids.  They were asking questions, and playing together, and were so sweet and so kind.  My heart melted and I was filled with hope.  It makes me sad that the information I found online only included all the negative, scary facts about PWS.  I wish I could have read about all the good things too.  Like that these kids have the biggest hearts.  They are loving and caring.  They are smart.  They are beautiful.  They will have friends and be happy.  

I decided that for Prader-Willi Awareness Month, I wanted to make a video that showed just how incredible individuals with PWS really are. 
    
I would have absolutely loved to be able to watch a video like this....to see kids with PWS smiling, sitting, running, having fun, graduating from school, enjoying life. At the time of diagnosis, I didn't know if any of this would be possible....or be part of our future.

 These days, I know our future is full of hope. It's not as scary as it once seemed. Life can still be good and happy, even with PWS. Clover is growing, and learning and doing amazing things. She impresses me every single day and I couldn't imagine life without her. 

>>DENVER TRIP

Every three to six months, we make a trip to Denver Children's Hospital to visit with different specialists for Clover.  This trip we decided it might be better for Curtis and Henry to stay home and for just us girls to make the trip.  I missed my boys terribly, but I also had some great bonding time with my little Clover.

We headed out Wednesday afternoon and she had a sleep study that night.  This was our most successful study yet (it was her third one)!  She didn't freak out when they attached the million wires to her body and she actually slept pretty well throughout the night.  The results of the study were also better than last.  Her apnea episodes decreased from 16 to 8 per hour and her overall oxygen saturation was higher.  I think last time her average was 88 and this time it was somewhere in the 90s. I can't remember??  She still needs to wear oxygen at night to keep her levels in the higher 90s.  I'm really hoping one day we will be able to ditch the nightly oxygen.

    
The next day she had a swallow study to make sure she is able to safely swallow liquids without silently aspirating.  Results came back showing some mild trace of aspiration, but the doctors weren't too concerned.  For the most part, she is able to protect her airway and the trace aspiration only happened one time when she was using a straw, so for now, we are holding back on the straw drinking.

The next day was a busy day at the PWS clinic.  She saw a total of 8 specialists!!  These clinics, while helpful, are also extremely exhausting....for both me and Clover.  I was frustrated right from the start because the very first doctor she saw was the ENT and he decided he wanted to scope her....which means he had to stick a little probe thing with a camera on the end up her nose and down the back of her throat.  Yeah, that's not at all traumatic for the poor girl!!  So that kind of set the tone for the rest of the day....Clover wanted absolutely nothing to do with anyone else after that....and our day was just getting started.  It was a very long day and emotionally draining.

The clinic ended with me learning that we would be staying one day longer than planned because Clover needed to have her g-tube site surgically closed since it didn't close up on its own.  I knew this was something that needed to be done, but had been dreading it because I did not want Clover to have to be intubated.  It's always a scary thing with any child, but even more so with PWS kids.  They don't handle anesthesia well, they can't have any narcotics for pain and their breathing issues are always a concern.

The surgery went well though and I'm glad we stayed and got it over with.  The hardest part about it all was coming back to see her after surgery and seeing the i.v. in her neck.  I warned them that they would have trouble placing it, and I guess they tried and tried and as a last resort, placed it in her neck.  That whole thing just made me really, really sad.  Poor little thing.  She was pretty upset when she first woke up, but after some cuddling and some apple juice, she was back to her happy self and even smiled and waved at the doctor when he came in to discharge us.

It was SOOO good to finally get back home.  Four days away from Henry and Curtis was WAY too long.  I'm so thankful though that my hubby is so dang awesome that he was able to take such good care of Henry for so long.....completely by himself!!  That man....he's a sexy one!!  



        

>>ONE YEAR AGO...

One year ago today I was sitting in the NICU cuddling my darling Clover.  She had just turned one month old.  The doctor walked in and shared some news with me that would forever change my life.  "Clover has Prader Willi Syndrome."  The words came out of her mouth so quickly there was nothing I could do to stop her from saying such an awful thing.  Those words stung my heart and at the same time caused a two thousand pound boulder to drop from the sky right on to my chest.

A year ago today was the hardest day of my life....followed by an equally hard week.  It was a lonely time.  The words Prader Willi Syndrome never left my mind, but I didn't want to talk about it with others either.  At that time, I felt like no one could possibly understand.  Nobody knew what PWS was, and even if I told them, they still didn't really know, nobody could understand the heartbreak I was feeling, no one could understand the fear I had inside me, no one could understand what it felt like to learn your perfect baby has an incurable,  life threatening disorder and there was nothing I could do about it.

I was emotionally exhausted, I was very scared, and I was very, very sad.  (I was also 7 months pregnant).

One minute I was thinking, "okay, we can do this!" followed by a breakdown the next minute asking, "how are we going to do this?"

As time went on, little things would happen that would fill me with hope.  Like the time the therapist said how great it was going to be for Clover to have a little brother to watch and learn from.  Or the time I saw a picture of a little boy with PWS riding on a dolphin during a family vacation.  Or the video I watched of a young girl with PWS walking for the first time.  And meeting other parents just like me who truly understand....whose kids have feeding tubes and oxygen and low tone and a spark in their eyes just like Clover.

I still think about PWS everyday.  It's a part of our lives now and will always be.  And I still have hard times and struggle.  But, I have learned so much this past year and have grown in ways I never knew I could.  Clover has come such a long way too.  She works so hard every day and she has a smile on her face the whole time.  She inspires me and makes me want to be a better person.  I love her so much and am thankful everyday she is a part of our family.

One year ago my heart was broken into a million pieces.  Today, my heart is full and  bursting at its seams.  I am happy and hopeful and very thankful for all that I have.  Today is a good day.

Clover (one month old) with daddy.  

She's had him wrapped around her little finger since the day she was born.

Clover today (13 months old)....and still daddy's little girl.

>>SHE SITS!

Lately I have been feeling a little discouraged with Clover's progress....especially relating to her gross motor development.  Her tone is still very low.  It's really hard to fully understand and get what it is to have low tone until you hold a baby with low tone.  You really have to support everything....trunk, legs, arms, shoulders, etc.  Holding Clover is a totally different experience than holding Henry.

She is still struggling to put any weight on her arms or legs.  When we try to put her into a crawling position, her arms just give out and she can't hold herself up.  Therapy has been pretty hard to watch the past couple of days because I have to sit there and see Clover struggle and get upset and cry and it is just heartbreaking.

Yesterday after a grueling day of therapy, Clover was left completely exhuasted and I was left feeling down and worrying about my sweet girl.

Then this happened....

I am so beyond proud of Clover.  She works so hard and is so amazing.  I want to cry everytime I watch this video because it is such a huge milestone for our little girl.  When she was born and in the NICU, we didn't know if she would ever be able to do this.

Henry was proud of his big sister too.  Wasn't that kiss at the end just adorable.  Love my sweet boy.

These two kids make me so incredibly happy and they teach me SOOOOOO much!

>>A POEM THAT TOUCHES MY HEART

This is a beautiful poem written by a mother with a child with special needs....

Welcome to Holland

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

Written by Emily Perl Kingsley (in 1987)

------------------

I used to work closely with families who had young children with hearing loss.  We would give the families a copy of this poem to help them cope with the news of their child's diagnosis. 

I never thought I would be reading this poem for myself.

But I have to say, I LOVE Holland.  I have already learned more about true love, compassion and hard work in Holland than I ever could have in Italy. Holland is truly a place where miracles happen every day

This girl has completely captured my heart.  I am so in love with her.  If being in Holland means I get to be with Clover, then I would chose Holland over Italy any day.

 

>>PWS VIDEO

This is an excellent video about Prader Willi Syndrome.  It will give you a little insight to what Clover has to live with every day.

>>PWS AWARENESS

Developmental milestones are typically delayed one or two years for kids with Prader Willi Syndrome. Although the low muscle tone improves, problems with strength, coordination and balance may continue. Physical therapy and occupational therapy help to promote muscle development and improve coordination.

Clover receives physical, occupational and speech therapy once a week. Her first therapy session was in the NICU when she was just a couple of weeks old. Now days, Clover's therapy sessions are done in our home while her brother and I cheer her on.

>>PWS AWARENESS

 PWS is a spectrum disorder and symptoms vary in severity and occurrence among individuals. With the benefit of an early diagnosis, access to growth hormone replacement therapy, and a nurturing environment, those with PWS are accomplishing more than ever. Nevertheless, even as many with PWS have the intellectual capacity to live independently, the challenges of the disorder are limiting, and the vast majority of individuals with PWS are not able to live without constant supervision.

When first learning of Clover's diagnosis, one of the hardest things for me to grasp was the fact that she may never be able to live an independent life. We all have hopes and dreams for our kids....mine included seeing my children grow up, finish school, fall in love, have children, live happy lives, etc. For a moment I felt like all of these hopes and dreams were shattered. The hope is back and I will do everything I can to raise awareness and help find a cure for PWS.

>>PWS AWARENESS MONTH

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.

>>PWS AWARENESS BANNER

This banner was created by a volunteer mom to help spread awareness of PWS.  Clover is on the top row in the middle.....and to the left.  I love this banner and I love all of these sweet kids!

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>>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!!

>>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.

>>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.