Miracle....Christmas Magic.....

Mommy and I talked today and I decided to let her write the blog today since we have such big news to share....so here we go....

Jim and I had decided a month ago to get a updated EEG on Harper for several reasons.  We do not like putting her through the inconvenience of having them but since she is now off all her anit-convulsants we felt we were at a cross roads.  The problem we were having was even though we were beyond thankful that her seizures had stopped (a miracle in its self - and they could come back at any moment) we wanted to treat the background chaos in her EEG (encephalopathy).  We were told that having seizures from birth can cause major delays in ones development as the neuro pathways are developing and the seizures have a significant impact on their formation.  Then you add the chaos and we were told that at the level she was she would be lucky in she ever left the NICU much less progress to the point she is now.  Again another miracle.  Our Neurologist at Children's has made it VERY clear that he has no interest in treating Harper's background chaos as 1. he feels it cannot be done and 2.  He is literally sacred to do anything with her since he cannot believe the strides she was made.  So this lead us to where we are now.....doctor shopping and needing an updated EEG to show them what they would be working with.

After an crazy weekend focused on Harper's pooping we still had not heard back from her doctor about her results.  Usually they call me during the EEG to update us.  I decided I would call them on Monday and rock the boat as that seems to be what I'm best at doing these days.  After leaving a message on the nursing line with no hopes of hearing back from anyone I headed off to school to get Aidan.  Jim and I were prepared to hear that her results were either worse or unchanged, but the phone call I received was neither of those two.  The nurse, one of whom I have never talked to before, in a very nonchalant way preceded to tell me Harper's EEG was "normal".  After I literally picked the phone up off the ground I informed her that that was not possible and she must mean "normal" for Harper, AKA still the same level of chaos.  She and I went back and forth several times and I finally informed her that I needed to talk to one of our doctors as "normal" was not possible.  After a hysterical call to Jim, he agreed that she must have misspoken and I should continue to reach a doctor.  Later last night we received an unexpected phone call from Dr. S, Harper's pediatrician.  She was calling us to see if we had been in touch with anyone regarding Harper's EEG results as she was looking at the report stating her EEG was in fact NORMAL!!!!  She was very surprised.  Again Jim and I questioned who interpreted the results and were still feeling things were not as being stated. 

This morning I received the anticipated phone call from one of Harper's doctors.  She confirmed what we were being told.  Her EEG is NORMAL, the encephalopathy is gone.  If we put her EEG next to another 7 month old no one would be able to tell the difference.  They are dropping her diagnosis and her main treatment at this point are her therapies.  

So what does all this mean.  No one knows.  Only time will tell.  Her Neurologist said she clearly has delays, but it is possible for her to meat each milestone in her own time.  Again something we never thought possible.  A miracle indeed.  We are scared, a new kind of sacred, we are scared to believe that this is true, but are moving forward with this gift and all that it brings.  Jim and I want to thank everyone for all your thoughts, kind words, prayers, gifts, and understanding.  We are so blessed to have this little miracle in our lives and we would not have it any other way.  She is amazing and that is only amplified by the love she has for her brother.  

Tonight we celebrate!!!  The celebration we should have had when she came home from the hospital, but were denied.

Scotty and Jim