LONG emotional day......Plans....

We started this day with hope! 

First Jon called me to tell me that Selah was again expressing displeasure quite clearly in being set up in a chair,  Third day in a row!!!!

 Then I had an 11 am conference call with Neumour's Hospital in Orlando.  To put it mildly it was a FLOP!  They only wanted to offer us some type of nursing home facilities in the Orlando area.  We were not looking for that nor are we interested in that at this point.  I felt the doctor tried to intimidate me by telling me that our insurances would not pay for her to be transferred to a hospital with the same amount of care that she had been given.  The idea being she should stay at the first hospital until she was ready to go home or to a nursing home...  Well I thought that was wrong and thankfully after talking to staff here, it is wrong!  So let's just say I burnt a bridge LOL  I have no desire to deal with them again after that call.  What a waste of every one's time, especially mine to try and push on us something we do not want.  Makes me really wonder ......

So at the same time that was going on, I was also calling St Mary's Rehab here in Rochester.  We arranged for a doctor to come in and examine her.  We had hoped for her to get some specialized care at St Mary's.  But they refused her case,said that insurance woulnd't pay since there was no goals that could be reached.    Basically she is considered too non responsive....  We asked alot of questions and got some hard truthful medical answers.  Both fs us were able to hold it together until the doctor left the room....  To be honest, despite the advances she has made, there is no medical hope for her to recover. 

So our plan is to go to Lakeland Regional, they have accepted her and arranged for therapy for her.  We do know the staff and think highly of their pediatric floor.  We used to be frequent flyer's with Sam there for many years.  It looks like she will be transferred early next week.  We will drive down and she will be flown.  Our sister in law will be there for her and take care of her until we get there.  Thank God for family, that you can depend on!!!  It will take us a couple of days to drive, we have to do eye drops and diaper changes...and that slows us down. 

So it's been a long emotional day for us.  I feel "wrung out"   On top of it, our debit/credit card was compromised by a hacker, through some store up here and our card got cancelled!  Just to top off the day....

So although we have been given no earthly hope, despite what we see as recent gains. our hope is still in the Lord who made heaven & earth.  That has not changed despite the tears this day has brought.    When the doctor walked out of the room, we just broke and sat with tears running down our faces, the weight of the world on us but gradually PEACE came through the darkness.  I can not explain it to you, it defies words...even now typing this with tears, I have the peace of God.  This is not the end...  Although we are heart broken to leave Rochester like this, to know our daughter is being flown to another hospital and there is an empty car seat in our van, we can still trust God.  When I think about how it is going to be, my throat clutches up so hard I can't hardly breath but God will be with us.  

If God never did another miracle or anything else for us, to have this peace is worth more than anything else in this world.  When I hear of tragedies, I often think "how does that person live?"  If you are wondering that as you read my blog, just know the only way I can live is the Grace of God.  It is very real to me, never once in these past 7 weeks have I been alone...  From the moment I saw the ambulances, police and fire trucks down the road and took off running towards them, God has been with me.  Those first few awful moments will never go away from my memory, my prayer was "God Help, God Help"  I just prayed that over & over again  and He did help....  He is our very present Help in times of need.  I have found that to be oh so true. 

All I can tell you is this is real, I think I'm in shock over the peace of God but it is a real peace that does pass all understanding....  doesn't sound too spiritual to say that I'm in shock from the peace of God but I am.  He is a good God. 

So please continue to pray for Selah, pray that we will see more and more responses...pray that all the right plans come into place.  We want her to be in the right place. 

So we are ending this day with hope also...our hope is in God!