Update

It has been awhile since I have posted. I am on the fence about even keeping this blog, but on days like today it is a nice place to update.  Today Easton had a test called an EMG.  It is a test where they put tiny needles in him, shock him and watch how his nerves respond.  This is the test that I wrote about after our appointment to the neurologist.  They did find that he has what is called a bulbar neuropathy.  It is where the nerves do not fire synchronously.  If they don't fire correctly then your brain doesn't get the message that is being sent.  This is the same problem he has in his ear...the auditory neuropathy.  This explains the dysphasia and other problems.  The 1st thing we will test for now is the syndrome she talked about a month ago.  Brown vialetto van larea syndrome.  They have done blood work and we should get that back in a week, if it is positive we will do some more testing on his genes to confirm what they find.  If it is negative they will do a muscle biopsy and test to see if it is something else.  The other few things they will be looking for are worse because there is no way to treat it.  All of these things are progressive, but if it is the BVVLS then we will hopefully be able to stabilize him now.  They have something that is called riboflavin, it is crazy high amounts of vitamin b2, it helps because the amino acids make it so his body can not retain them. This could help him to be able to have a better life.  He will start on this tomorrow.

I cannot put into words what this experience has been like.   It is very frustrating to watch your sweet little boy suffer and even just want to eat a bite of what you are eating.  It is so hard to see them poke and prod him left and right.  It is so hard to be the one who has to do that too.  Last month he got sick...really sick.  He required a lot more help, specifically a lot of suctioning, the stick it all the way down his throat kind.  It was nothing short of terrible.  It is hard, but it keeps him here so it is worth it.  It is hard to feel like you are on this journey all alone.  It is so hard to feel like no one understands.  Some comments are hard to hear, yet it is hard when you feel like no one cares.  It is hard when you feel like people stay away because they are scared.  This journey has just been hard.  BUT...we wouldn't change being Easton's parents for the world.  This journey has also been so rewarding.  We have had people step out of the cracks, love our little boy and have a genuine interest in his well being.  It is so sweet to see the little ones who flock to Easton, our little neighbor kids love him!    Those moments, whether it is a stranger, a friend or family are the moments where it doesn't feel so lonely.  The days when Easton melts hearts left and right, brighten our whole family.  Watching our children interact with him is so special.  They love and adore him and he does them.  Those moments help us to know we are going through the journey that our Heavenly Father has laid out perfectly for our family and our sweet boy.  Those moments make the hard one easier.

This past weekend Larry's sister Lisa stayed with us.  She and Larry were making dinner when they noticed Easton playing happily and talking to someone.  They both noticed a special countenance about him, as soon as he realized Mariah was near by he started to look at her and it all changed.  We feel the veil is thin, we have a different spirit in our home.  We are so so blessed and even though there are times where life is challenging, we are constantly learning, growing and enjoying this sweet little man and the spirit he has about him.  Our life is oh so good.