Tuesday, January 29, 2013

Couldn't be more proud of Kenna!

Through all that has happened it's McKenna's strength and tenacity that I've admired.  I don't think I could have suffered through as much as she has.  As you all know to add to all of Kenna's burdens Louise decided to make Kenna's benefit a power struggle and nothing has been settled.  Kenna turns 18 in a few weeks and has decided on her own to exercise her right as a disabled individual from being taken advantage of like she was.  She may be disabled but she is NOT stupid and I think this will be very good for her to right the wrong that has been done to her.  I was pleasently surprised to see how many attorneys there are to uphold the rights of the disabled.  I'm glad Kenna is so brave!

Wednesday, January 2, 2013

A New Year!

I can't believe it's already 2013 and the busyness of the holidays are behind us! Ours was wonderful with Lauren and her family and my parents coming home for Christmas. 

Since my last post lots has happened.  I've had so many inquiries as to where everything stands with the benefit.  Here's the latest........after contacting the attorney general for MN and sending her all the paperwork, receipts and police reports we had she has decided to take our case and prosecute accordingly.  I told her that I'm sure the "benefit coordinator" will claim ignorance to the laws of charitable benefit/fundraising for MN as stated right on their website.   The good thing is that that is not an excuse for breaking the law she said!!! Thank YOU!!!!  All receipts and ledgers regarding this event has to be kept for a period of 3 years and not one dime of donated monies can be spent prior to the benefit date.  I have the bank statements that show every withdrawal the "coordinator" made at her own discretion, acting as if those funds were hers to do with what she sought fit.  WRONG!!! and all those bracelets that were sold???? Not a dime was given to McKenna or put in her benefit account.  They call that a ponzy scheme.  The law also states in MN that if you have a benefit/fundraiser all monies are to be given immediately without restriction or deduction. Well, we all know that family thought they knew best for our situation and held the funds.  I wonder sometimes how they justify their actions? I'm sure they got advice from someone they think knew the laws and didn't question whether or not it was bad advice or maybe they think it's an excuse that will satisfy the courts......either way whatever they keep telling themselves I hope it works for them as they have no idea.  David wrote a bad check to us for some if the funds, he thought that by going to an attorney it would get him off the hook.  What he must have forgotten to tell that attorney is that the bank teller told him the funds were frozen before the date on the check.HMMMMM........that's illegal.  We have a signed affidavit from that teller stating these facts. Once again.....I have to wonder???? 

Anyway, that is the latest.  Our holiday was great, McKenna's getting stronger and life is good!

Monday, November 5, 2012

Tomorrow's outcome may change Kenna's life!

After the news report on Kare 11 was aired a specialist from Inver Grove Heights contacted us and wanted to help.  He makes prosthetic eye lenses that would enable McKenna to be more comfortable in her day to day life.  These lenses would block out all light except for the small part in the middle where it would be polarized.  We find out tomorrow if she is a candidate for these.  Just to have this particular Dr watching Kenna's story at the right time gives me hope that we are on the right journey to help her. 

Oddly enough, tonight the same reporter who did her first story contacted me to find out how the benefit went and why her viewers are contacting her with questions regarding the inability to send donations to Kenna's account.  As many of you know the benefit ended very poorly and I have only chosen now to write about it as Kare 11 is coming to do a story on it and it will be on the news. 

I believe that there were only good intentions at the beginning.  I also think we as parents should have thought more about who was running it.  There were too many decisions and too much work for one person to run it themselves and with this particular individual having no experience whatsoever with organizing anything it was a recipe for disaster.  When time was running out and even the smallest of things were not getting done we started to question what was left.  The fun details had been thought of but the major ones, the ones that would make this benefit a success were no where near being completed.  As things spiraled out of control the coordinators ego did also.  This became a self-esteem builder benefit for her rather than a benefit for our daughter and her parents were at the helm encouraging her behavior on.  The statuses on facebook that revealed her true intentions, "sorry if  I'm selfish but a little acknowledgment would be nice"  were just a foretaste of things to come. It was evident at the benefit when she wasn't even sober enough to answer questions asked of her that she just couldn't handle and didn't care about McKenna.  She had everyone make the checks out to her the day of the benefit.......odd?  She has no qualifications, NEVER has been involved in Kenna's care whatsoever or has any legal right to make any decisions for McKenna or her medical bills.  When opening a new bank account, different than the one set up for this benefit she deposited 60% of Kenna's funds saying she had the right to decide what was paid.  I know that there aren't very many people who attended the benefit that thought this person should be in charge of "their" donation money and where it went.  She acted as if they personally gave her money and said "please decide what to do with it". Since she decided to take matters into her own hands the bank has frozen all assets for Kenna due to fraud.  Even the police showing up at her door didn't faze her.  The police investigator called us back and said "that girl's crazy"!

Unfortunately, It's Kenna that is hurting most of all.  She has lost her grandparents in all this too, as they have stood behind the unacceptable actions of their daughter.  It will take us going to court in front of a judge to fix this.......but by no means is this the end.  We will make sure Kenna gets what she needs and that our family unit stays as strong as ever.  When all is said and done the losers are the ones who no longer have the privilege to be a part of their grandchildren's lives. How sad...............

Just got a phone call from the establishment that the "coordinator" booked to hold Kenna's benefit...........she never paid the bill! WOW, that's a responsible individual there. 

Tuesday, October 9, 2012

What happened?! Inquiring minds want to know.

What Happened?!

You may be wondering what the "full" story is of this incredible young woman.  I thought I'd share with you her story.

On  Feb. 23rd 2011 McKenna was in her sophomore gym class.   McKenna collided with another male student much larger than herself in the head.  Let's just say he broke his glasses and she broke her head.  She sustained 2 complete fractures to her cheek bone and a concussion.  Those symptoms were evident immediately and treated accordingly. McKenna's hit was so severe that her brain bounced not only side to side but front to back as her head slammed onto the wood gym floor.  This last blow to the back of her head crushed the 2 main nerves called Occipital nerves and has left them permanently damaged for life.  The pain that goes with nerves that have been crushed is incomprehensible.  It's the kind of pain that is so intolerable you cannot lead your life.  We fought for an experimental surgery in hopes that she would find some relief from this pain even though it included putting a stimulator in her skull.  I'm happy to report that her pain on a good day is now a 3/10 instead of a constant 9/10!

McKenna will always have damage to parts of her brain from this.  Her central nervous system has been affected to the point where her eyes will not constrict or un-dilate.  What that means is that McKenna has extreme pain from any light source.  She will have to wear special glasses anytime she is not in total darkness and even at that there is still pain because the glasses can't possible block out as much light as she needs. 

She also suffers from hyperacusis.  That is also caused by the blows to her central nervous system and involves her ears.  She hears at such an acute level that going anywhere outside our controlled environment at home is hurtful to her.  If there is a loud noise of any kind McKenna's body goes immediately into a seizure due to shock.  This makes her world very small.  She doesn't go much of anywhere other than her needed Dr appointments. 

Her brain does not want to acknowledge the right side of her world.  The Dr's are not quite sure why as they usually see this stroke patients.  At any rate,  when we go anywhere I constantly have to be on her right side holding onto her so she doesn't fall or trip.  I have to add that if you see McKenna out with me she will always have a smile on her face, even through her pain she still want to make someone elses day brighter by smiling at them.

McKenna's eyes to not converge which means they do not work together to be able to read.  Anytime there is an eye strengthening exercise tried her migraine goes off the charts and she's in bed for days.  Reading was one of McKenna's passions and this has effected her the greatest!

The last but by no means the least are her migraines.  For the last 19 months straight she has suffered from a migraine that is a 9/10. Nothing we have tried has helped with this.  McKenna has been on a total of 27 different medications trying to control her headaches without success along with many other types of regimens. 

We're not sure what McKenna's future looks like at this time but one thing I do know,  she is the strongest most courageous young woman I know and I'm so very blessed to be the one by her side going through this with her!!!

Friday, September 21, 2012

The day finally came!

McKenna had her permanent surgery last Monday.  It's so weird to think it's over seeing how it took so long to get to that point.  Waiting in pre-op was very surreal, almost like we couldn't believe we were hours away from her surgery. 

We totally knew what to expect, what the results would be and how this surgery being done will only tone down her Occipital Neuralgia pain to a livable number.  I'm getting the impression that others around us expected this to be a cure.  It's definitely nothing of the sorts, but at least this stimulator can give McKenna 5 years(hopefully) of a better quality of life than she would have had before. 

McKenna will always suffer from this Occipital Neuralgia as there is no cure (her nerves are permanently damaged), her migraine is still a 9/10, her eyes will always claim her as visually disabled.  Her hearing is the one thing that has improved ever so slightly but we'll take anything!

Knowing that this surgery decreased her horrific, unyielding, make you want to lay down and die PAIN is enough HOPE to get up the next day and go on. 

We are so thankful for every one's prayers and support through this as my own faith is being tested more than I think I can handle. 


Monday, September 10, 2012

First Hurdle Done.......

McKenna's surgery went well today.  She's in a lot of pain right now from her incision sight as she has wires coming out of it for the simulator box.  Every time she moves or coughs it pulls on the wires which in turn is pulling on the incision itself.  They didn't make sure she as all the way under before starting to shave her head with a razor blade and she said the pain was so extreme that it took her breath away and that she was crying so hard she couldn't talk.  They started to add medicine to her IV and she finally went to sleep, hearing that gave me the feeling like I failed her. Like I had somehow NOT conveyed the sensitivity of her scalp and pain level. Trust me........that won't happen again.  

It's been a long day, we didn't even get home until 4pm. and we left at 6:30 this morning.  We have pain meds for Kenna which she is on every 4 hours throughout the night and Zofran which helps with the nausea.  As of right now she says her occipital neuralgia pain is at a 4/10 which is a big difference from her never changing 9/10 over the last 18 months.  We have high hopes this works, just because her pain level today is down doesn't necessarily mean tomorrow will be just as good.  It's literally a day by day thing at this time.

Please keep praying for strength and healing as she's definitely going to need it over the next few weeks.

Sunday, September 9, 2012

It's finally here....

Well, tomorrow is McKenna's surgery day.  Surgery starts at 9:30 in the morning with arrival time of 7:30.  After seeing the surgeon Friday we learned a lot of details we didn't know previously, such as if she doesn't get at least 50% relief from tomorrows procedure they will not do the permanent one. Also, the device implanted will only work for about 5 years then her central nervous system will get used to it and her pain will come back.  With that statement made we asked the Dr what happens then and he said that hopefully there will be another stride in Occipital Neuralgia treatments made. 

Scared to death! That's all I can say about how I'm feeling for my daughter tomorrow.  I had to know some details but couldn't bare others.  They will have to shave her long hair from the crown of her head down and wake her up mid-surgery to see if they have the implant where it needs to be.  I honestly can't even think about the possibility of this NOT working to relieve her pain.  I hope that tomorrow I can report AWESOME news!!!