It's wrong! It's wrong and you know it is....

  Ever heard something said that made you so mad and disgusted that your whole body shakes in anger?  This has happened to me many times through out my life...not sure if this is good or bad.  Maybe I am simply more sensitive or I am more passionate in my belief of right and wrong...  However what I heard this time wasn't said directly to me...

Can you please listen to me?!?!!

  Ever had that conversation where you swear the person you are talking to has a list of questions they are obligated to ask and could care less about your answers?  They ask 'How do you feel about this' or 'What are your thoughts on this'....you voice your concerns and you pour your heart out....  Then they TELL you what THEY are going to do, which has nothing to do with what you said or it's completely opposite of "your thoughts"!  Why the F**K did you even ask!! 
  This is such a joy when it involves you or your family.  No really I love turning that lovely shade of red when I am furious because no one is listening to me!!      

Does Mom know yet?

  Have you ever felt like you were the last one to know something?  Yeah me too.  Ever had people talking about you behind your back?  Yeah me too.  Ever had people planning your kiddo's future without your involvement?  Yeah me too!!

Before I go any further...

  I just wanted it to be known to everyone that.... I have LOVED each and every teacher that has taught my children!  This needs to be shared before I continue because I do not want anyone reading this think that what we have gone through was due to anything a teacher did.  We were bounced around because of the School District Administrators and an evil word, "budget".
  In future blogs I will stress my true feelings of these certain District folks but first I need to tell you about what happened in our 2008-09 school year...

The way things were...

The start of September is the start of school.  Ethan started preschool at the age of three, September 2006.
  Ethan had been currently receiving speech in our home from an amazing woman who worked for Little Red School house.  Ethan's speech services started at 5 months of age, so it was sad to say goodbye to someone we had been with for so long.
  With the transition of preschool came the meeting with our home care nursing agency, the school district's nurses, and a lot of paperwork. To receive the speech services and because of where school district had their preschools, Ethan would be attending Marshall Elementary.  Our "home" school for where we lived was Cascade Elementary, but we will have this changed too.
  With all of  Ethan's medical needs we need home care nursing.  When Ethan came come from Children's, January 2nd, 2004, we came home to more nurses.  In the beginning we had one agency, after awhile two....then none, then we were back to one.  So it was arranged that the nurse would accompany Ethan to preschool.
  The story of no agency and back to one is important to understanding what happens at the beginning of  Ethan's second year of preschool.  By the time August 2007 comes we were down to one agency providing no nurses and one agency providing one....a phone call changed everything.
  While at work I received a phone call from the agency providing the one nurse.  The coordinator informed me that since they could only provide the one nurse and she was dropping down to one day a week that they would be no longer providing nursing care for Ethan.  Just like that they dropped our case and didn't bother to look for more nurses to send out.  Just like that I had no one to accompany Ethan to preschool in two weeks. Fitting that it was two weeks cause that's what I had to give next.   I put in my two week notice, said goodbye after 6yrs with an amazing restaurant and started school with Ethan.  Little did I know that I never really had to do any of this. I'll explain later:)
  So while attending the second year of preschool with Ethan I had to arrange someone to pick up my son Isaac, who had started kindergarten at Cascade Elementary, and I had to find a new home care agency.  To explain why I had to find a new one...remember the other agency we had providing no nurses....yeah that was ongoing from the beginning, let's just say they were no longer our agency....hmmm.....are we still with them?!?!?  Who knows!  Anyways in the crazy shuffle of the boys at two different schools one of the teachers mentioned I should do a In District Transfer to get Isaac over to Marshall.  So after a month Isaac was commuting with us and attending Marshall.  I found an agency that was able to provide a nurse after the winter break.  Boys are now at the same school, we have a great nurse with Ethan and I'll just do the In District Transfer every year.  Everything will be fine.  Right?  Wrong!
  Now we have to move...it's still unclear on the exact reason.  I argue one reason and the school district argues a few, my husband has a theory, and then the home care agency's coordinator has another!
  Ethan will be attending.....Kellogg Marsh Elementary.  But wait, Isaac has to go back to Cascade?!-No.  Remember when I said that Cascade Elementary was our "home" school?  Well it was until another elementary school was opened, Grove Elementary.  So some school boundaries got altered.  The school district argues this is the reason we got moved...we argue that the "services" Ethan needed were at Kellogg Marsh.-This is what I was told when I requested paperwork for an In District Transfer, in the office at Marshall.
  But there is something I forgot to tell you...  When we finally got a nurse in January of 2008, for those last months of preschool, Ethan's class got a new student.   Yup!  So apparently the school district had a little boy also needing to go to preschool that had a trach and......no nurse!  So this little boy lived near us and I had no idea.  So he attended preschool at Marshall for those last few months and shared the nurse with Ethan.
  Well enter the reason/theory my husband has about the move.....Kellogg Marsh was the "home" school for both boys and the other little boy's brother was currently there and since our boy is sharing that nurse....move 'em. -Later I will find this is the more likely reason the move happened. 
 At the start of the 2008-09 school year my boys were moved to Kellogg Marsh Elementary.  I didn't like it but thought... It is closer and it will have to be the last move....

A history so far....

  He was born on a Wednesday at 7:52 am. He weighed 7lbs and was 20inches long. He greeted us by way of a very powerful scream.  It was August 13th, 2003 when I first laid eyes on such a lovely face.  A face that over the years will teach me so many things.
   I knew right away something was wrong...he looked different.  I asked why and I asked for answers but no one could tell me anything.  I waited. He spiked a fever less than 24hrs old and wasn't passing fluids. They couldn't tell me why. They still couldn't tell me anything about why he looked the way he did. They did three lumbar punctures.  With each puncture they did two attempts for fluid, they never got enough to test.  Still to this day we don't know why he had the fever. They put him on IV antibiotics and an NG tube.  I demanded to be transferred to Children's in Seattle.  I needed answers.
  He was transferred out of the NICU on that Sunday via ambulance.  After arriving at Children's I was told about his syndrome within 10 minutes by their Craniofacial team.

  My son Ethan has Bilateral Hemifacial-Microsomia, also known as Goldenhar Syndrome. Here's an outline of some of his history and how the syndrome affects him....

He has an extremely small jaw, the jaw he was born with will never fully grow on its own.
This is more severe on his right side, it actually was missing half.
He was born with extremely small ear canals, they have to use special scopes from ENT @ Children's just to see in them!
He was one of the only few cases with this syndrome to have both fully formed ears.
He did however have large tags or nubs of skin in front of each ear.
He had a bilateral cleft on the left side of his mouth.
His tongue position was abnormal, as well as tongue tied.
His cervical spine is abnormal, C6 and C7 are fused.


With all of these anomalies Ethan was a "failure to thrive" baby. This means that he could not eat and breathe on his own., he stayed in Children's for about four months. 
 After Ethan's multiple codes(stopped breathing on his own), they placed his tracheotomy(11/03). A month before that his 1st g-tube was placed, later that was changed to a more easy to use model(03/04).

  Ethan has had and will continue to have surgeries until he is about nineteen years old, so far he has had 16 procedures (surgeries)to help him survive and look more like boys his age.
The other main reason for these are to help Ethan to be understood. Ethan has severe speech difficulties due to his jaw/tongue alignment. Every surgery he out grows effects his speech progress and every new one means he has to again adapt to the change. Because he has to deal with being misunderstood or not understood at all, it has lead to behavior and anger issues. Ethan has been receiving speech therapy since he was 5months old to help.  Also in 2009 Ethan started being followed by psychology at Children's and was recently diagnosed with anxiety.  This is seen mostly during unfamiliar social situations.
  Ethan will have his trach until he can maintain an open airway. The first quote on it being removed was at age 4, then 7, then it was 9, now we don't know. The main focus now is to get his jaw out far enough with surgeries so that it won't constrict his airway as he grows and his jaw does not.  This most likely will not be achieved until he stops growing.
  Ethan's most recent surgery (12/07) was one that he's had before, when he was 14 months old. It is called a mandibular distraction, they break his jaw and place an external distraction device on both sides of his jaw. This is held in by eight pins that go through to the jaw, four on each side. We turn a nut on the device twice a day for the first five weeks(to stretch the gaps in the bone), and go to Children's 2 or 3 times a week so that Dr. Hopper can rotate the positions of which way he wants the jaw stretched.  The first distraction we turned for five weeks, Ethan went back for a replacement device, called a conversion rod, which holds everything in place while the new bones grow. This whole procedure took about 17 weeks the first time and 20 the second time. The second time he also didn't have the conversion rod and we turned for about 8 weeks.  Ethan's next mandibular distraction is scheduled for the summer of 2011.

This link will show you the progress of his first mandibular distraction, the slide-show is CT scans of Ethan's jaw:)  Scroll down the page until you see the CT scans.  This is also a good site to learn about Hemifacial-Microsomia.

http://craniofacial.seattlechildrens.org/conditions_treated/hemi_micro_treat.asp#hemi_micro_treat_slideshow

There are three categories as to how the syndrome comes to be; genetic, trauma in utero, or just because....Ethan falls under the "just because" one.  More and more research on this syndrome is proving that the "just because" category may be the only category.  There are no prenatal tests that can detect this anomaly. Later when pregnant with Eva I had genetic testing which proved very little.  Also I had numerous intensive ultrasounds to watch the bone growth of her jaw, but that's all they could do.

  So now that you have some background I can share with you our life in the now...