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

Today's the one year anniversary.....

February 23rd, 2011 marked the day in our lives that everything changed. Unbeknownst to us on this day last year did we know the road we were being put on.  McKenna and I have spent lots of time talking about the what-ifs, the what-didn'ts and the should-haves over the last couple of weeks as this anniversary approached.  


We discussed how it's just a day , but that isn't true.  McKenna lost her ability to go into light without sunglasses 24/7, to enjoy public places because any noise is extreme to her, to have conversations with more than one person or her brain just shuts down  and the ability to READ.....her most favorite thing  in the world.  I haven't even touched on the pain piece yet and that is the most heartbreaking.


She went to the Dr. yesterday and wore a bright coral shirt with cute scarf.  Her hair was shiny as it had just been washed and she had her nails painted! She LOOKED sweet.  As the conversation got more in depth the Dr had asked different things and one of my answers was "People have an expectation of what they think someone who has a headache of a 9/10 should "look" like.  Sometimes kenna does look like that, in fact most everyday at home her functioning with little things is excruciating, then we plan our week.  We know that if she has appts on Tuesday that we need to wash her hair no later than Sunday because she needs time to recover, and her bath then needs to be on Monday.  If I paint her nails we know it will cause one seizure and a 2-hour nap.  All that just so when she finally gets out of the house she can feel good about how she looks.......after all brain injury or NOT she's still a teenage girl"!


Today we are putting 3 things each into a bucket that we want to accomplish in the next year.  We chose a bucket because kenna always says it seems like her and I are this bucket together! :)


We are also going to burn a calendar of the last year and light a candle.  


I have learned so much from this last year. A lot of which was not pleasant but the strength that my 17 year old 93 pound fighter has....astounds me every day!


I am proud to be in this bucket with McKenna!!!

What doesn't kill you makes you stronger.....

I don't even know how to put into words the experience we had today.  We were under the understanding that McKenna would have another round of shots to the back of her head to find out exactly where they will need to do the surgery.  That in itself was nerve wracking but then as they put her on the table with the x-ray machine I thought something was going to be different.


The next 15 minutes were pure HELL!!! I have never been more scared for one of my children before.  They prepped her neck for this procedure, sterilizing and draping with sanitary cloths.  They then had a series of shots all right but they put into the nerves between her c2,c3 and c4 spaces in her spine! The pain she endured, the crying I heard and the helpless feeling was overwhelming! All McKenna could do was lay on that table face down with her arms at her side paralyzed with fear and pain.


I kept telling her from behind the lead wall that it was almost over and that relief would be soon!  After it was done,  she was so stunned from all that had happened that she could barely talk.  Her brain had literally shut down, and to make things worse it didn't take any of her pain away!!!!

Words cannot express.....

Yesterday McKenna had an appt with a new neurologist, one that specializes in the severe head pain she has.  After 5 minutes the dr. wanted to try nerve blocks on her. That entails 4 shots into the back of the skull into the nerves that are raging with pain!  I was so proud of McKenna........through her tears she said " if Caleb could go through heart surgery then I can do this"! 


Yes, it was horrible for her. Yes, it was horrible to watch, but within 5 minutes the pain in the back of her head was gone. Her migraine is still a 9/10 but the severe pain in the back of her head was gone!  


The block only lasts 5 hours and she went to bed before it wore off so I'm not sure what today will bring, but we will be having a more permanent block done within the week!!!!