Russell Silver Syndrome........................

Good Evening All -

This past week I signed up for the Magic foundation online - its an organization for children and their families with growth disorders.  After doing long hours of research in between everything else - plus a tenative diagnosis from genetics - I believe our little Mallie has this rare syndrome.  Russell Silver or RSS is mainly considered short stature - but there are so many things that contribute to it .....she really fits the profile.  Anyhoo this Magic foundation sent me a book and I mean an encyclopedia on RSS.  I wish I had signed up sooner - OMG!!! This book is like the RSS bible.  Its about 300+ pages all about everything to do with it plus stories from other people.  I believe that I am now way more eduacated on this than the doctors in GR!  Some of the things I thought were unrelated to RSS actually do have a high occurance - like malrotated intestines and hearing loss!  It all makes so much more sense to me now.  I am no where near being completely done reading the book but what I have read has been so helpful.  I will be contacting doctors tomorrow to talk more about this.  Physicians can get this book for free and with RSS being so rare I don't think most of them know what all goes with it.  I really hope to get in contact with a doctor who understands this.  Mallie still has so much ahead of her with more tests and doctors...ugh!!!!  The thought of it really does not sound like fun for any of us.  I am in complete acceptance of this now - I am now on to what do we need to do mode.  Funny thing is I came across this syndrome when Mallie was 4 months old one night when I was researching things.   When I read about it - man I thought she had it.  I ran it by a few people - but like me we all wanted her to be fine and not have anything....so I made a vow to quit looking things up for awhile and enjoy her :)  When 6 months came around I still just did not feel right about some things.  Steve and I talked and agreed to head to GR for follow ups on her.  So here we are - so close to an official diagnosis.  We just need that official - I believe will come from genetics at this point.  Either way - we have lots to do for her from here on out.  I have so much to say but don't have the energy tonite - will explain more about this later.  Those of you wishing to learn more - just google it.  Or if you really want information - sign up for Magic - the sign up is a donation so it can be used for taxes :) 

On another note - finally talked to the GR peds friday and she must agree that her ears need to be done asap too - so she will be calling the ENT to see what she can do.  As far as the intestinal malrotation surgery - it needs to be done - but there are some other things we need to look at before that surgery now.  It is possible that Mallie has delayed gastric emptying in which sometimes because she is still full she won't eat.  I believe this because when I try to force her - sometimes she will throw up :(  If this is the case when they do the malrotation surgery and probably do a feeding tube - that feeding tube will not help if her tummy stays full longer than normal.  So we need to check into some other things which we do have time since that surgery is still a month and half away.  i will keep everyone posted on what we find out! 

Steph