Monday, August 13, 2012

My heart is overflowing!

Thank GOD!!! Today we learned that Blue Cross will cover Kenna's surgery!!!!

I can't even paint a picture with words to show what it was like at our house during that phone call bringing the good news!!!

Every single person was crying with JOY! We are still in shock, at times it still doesn't seem real.  We are looking at mid September for relief for Kenna but we'll take it!!!

I spent the day on the phone trying to orchestrate appts and find out what our portion of the surgery will be. Anything will be better than the $100,000. we were told before.

I'm going to go celebrate with my family tonight.........Thanks for every one's support!!!!

Sunday, August 5, 2012

Wish I had better news.....

It's been over a month since my last blog, I guess I was holding out for some great news to report.  I don't have great news but we are still waiting for the appeal for Kenna's surgery and I guess waiting is better than the common "no" we usually hear. 

McKenna had an appt with the neuro-opthamologist last Monday.  This particular Dr is the top in our state.....we are always referred to her by everyone we see.  Not having seen her for over a year we went with guarded but excited spirits.  Last time we saw her she told us that Kenna's injury was on the severe side and it would take a year from the injury to get better. When last Feb. came and her eyes were no better we lost hope in this specialist, and maybe thought someone else would have more insight.  We've been around that block a time or two and found that no one seems to know why Kenna's eyes are so bad.

We were called into her exam room, where the four of us sat, Mark, Kenna, Dr. Ruebenfeld and myself.  She asked us what has changed since she last saw us 15 months ago......we answered "nothing".  The look of surprise on her face kind of shook me.  I thought to myself, "hasn't she had any experience in all her years of someone NOT getting better"? She listened while I gave her a run down of the last year and all the Dr's we've seen are seeing and have appt's to see.  She would speak and I'd say "been there, done that, seen him/her". She kept looking at Kenna sitting in the eye exam chair with wonderment.  When approaching her head and giving her forehead the slightest touch Kenna winced and told her how much it hurts. After attempting to touch other places on her head ever so lightly she realized that Kenna cannot stand ANY touch no matter how soft. 

She sat back down in her chair, looked at Mark and I and then looked at Kenna.  The sorrow I saw in her eyes I had NEVER seen in a Dr before.  She almost looked as if with the prompt of our sadness she could cry right along with us.  I'll never forget her next words as long as I live. She told us "Your daughter's Occipital Neuralgia is so acute that if she doesn't have the surgery her quality of life will never be any better than it is right now". QUALITY OF LIFE!!!!????? What? I didn't even know what to think except to ask her if she'd put that in writing!? She agreed, she wished us well and off we went. 

I don't know how I feel about this still.  We have discussed having Kenna learn braille but I haven't given up HOPE that this is not her life's sentence.  I'm taking a note from my incredibly strong and courageous daughter "Never Give Up"!!!