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!!!! 

HUGE Day!

Today was a huge day for McKenna.  We had our 4 month follow-up appt at the audiologist and the acute hearing in her left ear has slightly improved!!! Now her hearing is close to the same in both ears, meaning, she still has horrible acute hearing but now they are both the same rather than the left ear being worse than the right.  For once we got encouraging news at a dr.s appt! LOL


Tomorrow is the BIG appt at the Noran neurological clinic for her occipital neuralgia. Please say some prayers that they can help Kenna with her pain!!!


Here's hoping for a brighter tomorrow!!!!!

Next?????

Well, today started with a birage of phone calls, starting with Kenna's neurologist and ending with an appt for Tuesday with another neurologist who specializes in Occipital Neuralgia. We're hoping that Tuesdays appt brings hope in the way of injections to deaden the occipital nerve in the back of Kenna's head. If these injections are successful that would lead to a more permanent solution to her pain.....or at least some of her pain. I can't even picture what it would be like for Kenna to be able to brush or wash her hair without excruciating pain. How wonderful it would be for her to actually be able to lay down and sleep! When someone suffers from this you can't even hug them because it causes so much pain, that leaves a very lonely feeling!

Here's hoping to very Happy Valentines day for McKenna!!!!

Almost a year

It's been almost a year since Kenna's injury. Last week at the neurologist we were given some different avenues to take. They included a steroid boost (which didn't work), upping the dose of one of her current meds, adding 2 other meds, botox injection, spinal tap and occiptal neuralgia nerve blocks. I look at my daughter and think how brave she is to listen at these appts. knowing that none of them sound pleasant and some sound down right scary.

She said to me yesterday that she never wanted to be a pioneer! She never wanted to be one of those cases that the dr's can't really help with easy solutions. I didn't know what to say at that moment. If I could take every single pain from her and carry it myself I would, for the rest of my life, I would!

I used to think "why" and now I've started to think "why not"? I am going to find relief for my daughter somehow somewhere. It may take us to many places or states but I am not going to accept that she will suffer like this for a lifetime!!!  I guess if God thought I could handle a husband with a brain tumor, the death of my first grandson, and now watching my daughter suffer daily with a TBI I better get to it!!! I better prove he was right rather than telling Him daily that I can't.......