Still pluggin along....

   WOW! What a wonder the internet is.  We belong to a group on facebook for Occipital Neuralgia and through that support group we got the name of a surgeon, 1 of only 30 dr's in the country that implants a surgical stimulator to help those that suffer with Occipital Neuralgia. He happens to be in St. paul no less! We had an appt 2 weeks ago and he said Kenna is definatley a candidate for a periphearal nerve block stimulator.  He also said if we had $100,000.00 dollars he'd do it the following day....LOL!!!! Well, since that's not an option we had to be referred to the United pain management center in St. Paul for a 4 month trial before insurance will cover 90%. We are just waiting now to be contacted by the pain center to get our first appt.  One thing we did find out at this appt. is that Kenna's nerves in the back of her head are permanently damaged, that's why the pain is so severe. This surgery will not "fix" it, it will only trick her brain into thinking the pain is not as bad.  Lots of unknowns.....we don't know how much the stimulator will decrease her pain, we don't know how long it will last, we don't know if there will ever be a cure.  Just like a spinal injury once those nerves are severed or badly damaged there is no repairing them.

My daughter, McKenna sits at these appts listening quietly. Sometimes her brain injury prevents her from understanding everything and she just shuts down. Sometimes the tears roll down her cheeks as she tries to come to terms with what her life holds for her now.  I know I've said this before but her mere strength and perseverance through this amazes me! Throughout the last year we've had so many comments as to what people think she wants to hear.  "You'll still be able to be in the FBI" or "When this is over you''ll pick up where you left off" and my favorite "God has a plan".  Well,  HE may have but I don't believe my God's plan is to make His daughter suffer day after day relentlessly.  I believe He's here but I don't believe it was His plan to hurt McKenna so bad.....

As of now, Kenna has started planting seeds for her garden.  It gives her something to look forward to every day. Now that they're blooming she's even more excited.

On one last note, the OCR (office of civil rights) is now looking into the mishandeling of the circumstances surrounding Kenna's education.  We're looking forward to their findings.

"A little collision in gym class"

I have to laugh at the stupidity of people. At McKenna's appt on Wed. the nurse who was supposed to administer the nerve block shots says to us "I heard you had a little collision in gym class".  Well,  if it was a little collision I'd hate to see what a BIG collision would be like! 


We went to that appt with high hopes. Hopes that for 5 hours Kenna would be free from that pain that wears on her so badly.  Unfortunately, it turned into the appt from hell and we left with our little fighter barely able to walk from the pain and being told to "breathe" because her mind was so overwhelmed!!!  This nurse came at Kenna's head with such brutality and inconsideration that NO ONE has ever treated her in such a manner.  Before I knew to move the nurse aside the damage had been done and Kenna was beyond a world of hurt.  Of course, I scooped her up in my lap and cradled her telling her it would be ok but all the while thinking I should punch this ladies lights out!  All McKenna could do between gasps of pain is cry to go home PLEASE!!!!


As we were leaving the nurse says "sorry for the flare up"! FLARE UP?????? OMG, I was speechless!


There were also other details to this visit like, I should be giving Kenna narcotic shots into her muscles at home, and we should have her on a "cocktail" of sorts of medicine.  


It is scary how much liberty this nurse felt she had concerning my daughter's care.  We are trying to wean her off of anything that is not working NOT add.  The last thing we need is an addiction problem too.......


Monday we have a new appt with a new neurologist. One that specializes in deep brain stimulation and is 1 out of 30 drs in the country to actually to the peripheral nerve block simulator.  Please pray that we have come to a place finally that will help Mckenna!!!!

Just when you need it!

Just now our doorbell rang, standing outside was our local florist.  He handed me a wrapped bundle and said they were for a "McKenna".  McKenna as right behind me and couldn't quite comprehend what was going on. I told her they were for her and we took them into the kitchen.  As I opened the paper she stood in surprise, out of the package was a beautiful lavendar flower arrangement sent to her by her cousin "Leah".  The card stated that she was thinking of her and when Kenna was up to visitors she would like to visit.

I wish Leah could have seen Kenna's face.......she made her day!!! Kenna sits with me at home every day and feels very alone.  The gesture of this kindness was bigger than even I realized until I saw her face.

Thanks YOU Leah!!!

The countdown begins

One week from today McKenna will be getting another round of shots in her head. At this next appt we will learn what avenues we can take to hopefully get her Occipital Neuralgia under control.  We are hoping that soon she will have enough relief that we can wash her hair and sleep through the night.  I think I'm being too optimistic as far as results in a timely manner......nothing goes quickly in the medical field.  


Spring break starts tomorrow and Troy's week of vacation starts on Monday too!!! Lord help me! It will be a full house all week long......LOL


Kenna doesn't handle change very well and so the added people and different routine will be difficult for her.  We will have to start working on dealing with it today.  


GOD works in mysterious ways. My daughter Taylor is expecting her first baby on August 26th and McKenna is beyond thrilled!  Actually, we ALL are!!! After losing Caleb and Lauren living so far away with the other grandbabies it will be exciting to have a new life around here.  We will find out on April 2nd if it's a boy or girl....I think girl.....BUT I've been wrong before.LOL