>>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.