Taylor update.....

[TaylorsMom]

   Yep, still alive and kickin'.  I haven't been on here in a long time and new news demanded an update for you all.

Some of you know she had 3 CK treatments last summer right before the symposium.  She had the first follow-up MRI April, 15th.  No change.  It's still about 8mm x 7 mm. 

She developed another infection in her check where the muscle graft is, in early November.  Antibiotics knocked it out with no more surgery needed this time, thank goodness.  The muscle is working and getting stronger all the time.  It's not pulling the corner of her mouth up as much as we'd like, yet, but more improvement is coming.

She has done well at college this year.  She says she has no social life and has to study more than most people to keep the grades up.  She has taken 2 years to do the 1 year pre-nursing classes.  Finals are next week.  She gave up on gaining enough control of her right hand for fast and readable handwriting and has taught herself to write with her left hand.  She applied for admission to the School of Nursing this spring to start the 3 more years program this fall.  We have been anxiously awaiting the letter.  She tried not to get her hopes up as it's competitive.  They get many more applicants than they can accept.  She has been asking me almost every day if her denial letter came yet.  She finally got notification by e-mail yesterday.  SHE'S IN !!!!!!!!!!!!!!!!!  She seemed shocked and already anxious about what the next 3 years will be like.  Her determination has taken her so far.  We are so proud of what she has accomplished after all she has been through.


Hoping to see you in Cincinnati in '11 !!

Kathy

[saralynn143]

Congratulations Taylor! Job well done, and now the real fun is going to begin.

I enjoyed meeting Taylor at the Chicago symposium and admire her perseverance.

Please keep us updated on her progress.

Sara

[jerseygirl]

Congratulations, Taylor! Wonderful news!

Incidentally, I had handwriting difficulties after both of my surgeries and I began to write with the left hand after the first one. I was shocked at how good I got real fast. Eventually, I relearned to write with my right hand but that took years until I was as good as anybody else. That was 20 years ago, at the age when computers were just beginning. Now I don't have trouble writing notes or any other quick handwriting. For prolonged handwriting, such as college notes, I use computer and type instead. There is also dictation software called Dragon Naturally Speaking that I use at home. I wonder if Taylor tried these. They might be helpful along with handwriting with the left hand.

Anyway, continued success to Taylor and don't give up hope as progress is slow but certain.

             Eve

[Kaybo]

YIPEE!  That is wonderful news - I know you are a proud mama and so excited for Taylor!  Way to persevere!!

I went back to teaching 3 months after my surgery & stroke and had to completely relearn how to write.  I did handwriting with my kiddos (I now have perfect D'Nealin handwriting on highway lined paper!).  I found writing on the board (large motor) took way too long - to this day, I write on the board with my left hand & now can write normal (on paper) with my right.  I started out with left right after surgery (no movement what so ever in right) and did MUCH better than I thought that I would!!  Where there is a will there is a way!!

K   

[Cheryl R]

Taylor and Kathy!    I am so happy to hear of the good news!       She will really understand what a patient is going thru.   My schooling was so long ago and it is all different now with what the medical field has.     I do miss working since did retire 2 yrs.           You will have to keep us posted how it goes as we are part of the family!         
                                               Cheryl R

[Sue]

This is WONDERFUL NEWS!  As the kids say, or used to say, 'I'm stoked!"   Wow, totally awesome.  Taylor, I do believe you can do anything!   I could never learn how to use my left hand for writing.  That gives me a headache just thinking about it.  Incredible. 

So happy for you and your proud family,

Sue in Vancouver, USA

[leapyrtwins]

A huge congratulations to Taylor 

I think she'll make an outstanding nurse!

Jan

[4cm in Pacific Northwest]

   She applied for admission to the School of Nursing this spring to start the 3 more years program this fall.  We have been anxiously awaiting the letter.  She tried not to get her hopes up as it's competitive.  They get many more applicants than they can accept.  She has been asking me almost every day if her denial letter came yet.  She finally got notification by e-mail yesterday.  SHE'S IN !!!!!!!!!!!!!!!!!  

Right on Taylor!

That's the keep moving forward spirit.  Because you have been a patient so many times- that empathy and understanding for others in the patient seat (or bed) will give you a huge edge on "the people side" of nursing- that other nursing students (or nurses) might not have.

This is really great news!

You know I think you and your mom should get the popcorn popper popping and watch this
Front of the Class about Brad Cohen
http://www.youtube.com/watch?v=EuhyVHLlfXE

Know this is a true story. He is so wonderfully good with kids   as he had immense understanding and passion for his students. Not only did he eventually succeed in his career (and become a celebrity with his own foundation)
http://www.cnn.com/2009/HEALTH/07/27/tourette.camp/index.html
... but he did also eventually have a social life in college too.

If I ever have to go back to hospital for the "brain booger" I would be thrilled to have a nurse who truly "gets it" and knows what it is all about. You are heading into nursing school way ahead of the others in the experience department. If I ever have to go back to a brain booger hospital… I would be thrilled to have you there.

When I sat next to you at the symposium I saw a neat feisty youthful person who spoke for herself... and other's listened when she spoke. (In Jackie Diels room you could hear a pin drop when it was your turn to speak.) When the facial stuff makes me feel self conscious I just think about the guts Shelby Dressel has...

Ms Dressel inspires me to surround myself with people who look at me and my abilities not my disabilities (of not producing the perfect smile or being SSD)... Young Ms. Shelby even has her own wiki page now...
http://en.wikipedia.org/wiki/Shelby_Dressel

Here is her website
http://www.shelby-dressel.com/

Wouldn’t it be amazingly cool if she sang for us in Cincinnati?

Something tells me Taylor- that YOU have just as much ump spa as Shelby…

Looking forward to the upcoming Taylor wiki page. Keep us posted.

Way to go Taylor! DHM

[Jim Scott]

Kathy ~

Thanks for sharing the good news - and congratulations to Taylor on gaining admission to nursing school.  Well done!

Taylor is a remarkable young woman and your parental pride is absolutely justified.  May you both have more such good news in the near future. 

Jim

[nancyann]

I am in awe of her !!!   Nursing school is quite demanding, & with all she has to deal with on a daily basis (I know...)  she is one smart cookie to have been accepted.
It's great she has the insight to know she needs to pace herself differently than others.  She beats to her own drum !  Not only smart but determined.  With that attitude the world is her oyster.  WAY TO GO TAYLOR !!  I/we are so proud of you !!!
Always good thoughts,  Nancy

[moe]

Congratulations, Taylor!
 
The nursing journey will soon begin. I'm sure you can handle it. It'll keep you very busy , that's an understatement. But you are one step ahead of them all!
Good luck and yippeeeeee!
Maureen

[Brendalu]

Kathy and Taylor.........this is wonderful news to wake up to!  Congratulations and I know you will make a wonderful nurse, Taylor!
Kathy, Taylor is lucky to have you for her Mom.

Hugs,
Brenda

[4cm in Pacific Northwest]

Taylor,


More thought on Shelby Dressel as a role model and inspiration (for young and old)
You know…. I have been thinking about Shelby Dressel some more since my last post above. (That "kid" has such a spirit!    )

I am not a big TV watcher nor am I that up on American Pop culture. Truth is if I was in the same room as "Simon" from American Idol (AI) I am not sure my words would be kind to him  ...    uh hum    ....

I think it takes guts for anyone to even try for that show... and when some do win I certainly do not agree with the judges and say "huh?"     ... and when some loose I do not agree either  and again say "huh?"  ... Truth is some days the concept of the show makes me cringe.
 

HOWEVER when Shelby was on there (and I had teens and youth bring her to my attention) I was captivated.   She reached my heart and that of many-(particularly any of us that have some physical obstacles that have people pre judge us or make prejudicial assumptions.)  However she also reached the hearts and minds of people who do not even have facial nerve issues.

I saw a different video take on Shelby’s experience
http://www.youtube.com/watch?v=zuFuiAZW80g

Shelby has captured many hearts and consequently many people have not forgotten her. Nevertheless what is amazing is  that show  did (yes the one that makes me cringe- aka AI) is it gave her a spotlight and a platform for her to reach  others. I think this young age-20-something has a "calling" ... or some may say a mission.
(You know? I think she even touched the infamous insensitive Simon)

Shelby has got back on the horse and has not let this knock her down.


Don't give up on a college social life!
I truly believe it is NOT always going to be that way.

I have met you Taylor and I think you have got something there    ... and I heard that ump spa come out toward the latter part of the symposium. I think we are going to have more and more "young people" (now don't I really sound like an old fogy )  join the ANA with these tumors ... and it won't just be dominated by us middle aged (yah I am a middle aged mom) and senior people. (Rumor has it old “Scotty” aka Jim Scott  can Java Jive like no other with the Manhatten Transfer)


Leadership
Taylor- I think you are going to make an awesome nurse. Let me take that back … I do not “think” it- I “know” it!

You know college can be tough and sometimes the big disability that many people have is not their physical handicap (be it hearing impaired, face issue, balance etc) but is other people's prejudicial attitude towards them. What I like about young people  like Shelby Dressel and Brad Cohen is their "well this is whom I am and I can run, sing and or dance with the rest of you" positive attitude.  I like to call it the “git back on the horse” attitude.

Something tells me that not only are you going to rock  at nursing school but you are called to go and do something in a leadership capacity with "acoustic neuroma" and/or the field of study related to it. You may have been one of the only younger people at our symposium but I think this is going to change as MRI's become more sophisticated, education about our weird 1-in-a-zillion chance (ok ok 1 in  200,000) brain boogers steps up ...so PCP (GP) doctors are “in-the-know” and find these in us earlier (and younger)... As we get more young people with this ANBBB (Acoustic Neuroma Brain Booger Business) something tells me YOU are going to be a community leader in all of this.

I just know that you are going to be taking a leadership role later in your post secondary education... maybe not right away but in the latter years.

One book I highly recommend summer reading before college reading requirements swamp you in the fall is Seven Habits of Highly Effective people
http://en.wikipedia.org/wiki/The_Seven_Habits_of_Highly_Effective_People

I am thinking you would be a good person to advice the coordinating committee for our upcoming ANA symposium. There was lots of stuff at the symposium for us middle aged  and older folks - but I think you would agree that you were sort of on you own in your age group (Yet I know there were some other "kids” there - who were part of the NF2 group during the bigger talks in the ballroom.). As you start selecting courses and getting to know instructors, at nursing school, see if you can be part of a committee with the ANA and actually get some college credit for doing so. (You could easily contribute to a committee on-line.) Some schools have a community service component and/or requirements. Perhaps you and your mom together could contact Judy or Melanie at the ANA office to toss around some ideas... Remember Amy at the symposium that offered to let you try out her Baha? (She let me try out hers with her I-pod... very cool experience) I bet she would be receptive to hearing the views of a younger person with this ANBBB. Maybe something can be set up in Cincinnati so the "age 25 and under ANBBB crowd" can actually meet each other and have a workshop they can specifically sign up for.

SUMMER CAMPS?

Imagine if you could have gone to a summer camp and been with kids who were just like you after surgery
Brad Cohen, the subject of the Front of the Class DVD, did NOT like going to support group meetings, as he was the only "kid" there... Now he actually organizes support groups and activities for younger people. (If you ever watch that movie be sure to watch the "Special Features” where they interview the real Brad Cohen.) I think his summer camp looked pretty cool- that he started (above CNN article link I gave).

Did you know that HOUSE actually has a summer camp for kids?

This is from a camp search  page
http://www.drf.org/magazine/39/Spring+2010+Issue/article/315
QUOTE

"WEST/PACIFIC

House Ear Institute
Sharing is Caring Family Camp
June 5-7 (ages 7-17)
Contact: Marilee Potthoff
(213) 483-4431
2100 W. 3rd St., 5th Floor, Los Angeles, CA 90057
www.hei.org
mpotthoff@hei.org"

Here is the webpage at HEI
http://www.hei.org/education/camp/camp.htm

Ok so you are too old to be a camper now …. Hmmm would they not only have counselors but hmmm ....also a camp NURSE?  This maybe a cool  summer internship thing to do.

There are actually a number of summer camps out there for kids with hearing issues.
http://clerccenter.gallaudet.edu/Clerc_Center/Information_and_Resources/Info_to_Go/Resources/Summer_Camps_for_Deaf_and_Hard_of_Hearing_Children.html

Would it not be cool if there were a camp just for kids who have facial palsy issues where they could be together, be themselves... and not feel self-conscious?

I am going to contact some powers that be  at this clinic … to see what they think?
http://californiafacialnerve.org/index.php
Maybe put a bug in my PT's ear….

Brad Cohen of the movie Front of the Class created Camp Twitch and Shout for kids with his same neurological condition
Here is a video from CNN about the camp idea
http://www.cnn.com/2009/HEALTH/07/27/tourette.camp/#cnnSTCVideo
Web page for the camp
http://www.camptwitchandshout.com/

A Vision?
You know I might just fire off an e-mail to Shelby Dressel myslef…
(I am not kidding when I said I think she would be great to have as a performer at our next symposium) http://www.anausa.org/symposium_overview.shtml ) Maybe SHE has the ump spa to help get a camp off the ground for kids with facial palsy like Brad Cohen did!


Do ANY of these ideas interest you Taylor? Or are am I too wild and way out there?   

I don't know Taylor... maybe I have a vision here ... or maybe I am just weird  . Only time and results will tell.

DHM
(A middle aged mom on a mission  )

[CHD63]

Kathy and Taylor ......

How exciting for both of you to have leaped over this huge hurdle with relative ease!  Taylor, with your intelligence, experience, determination, and motivation I know you will make a terrific nurse!  Hang in there for the long haul ..... it will be grueling but well worth it in the end.

Best thoughts.  Clarice

[saralynn143]

I'd work at your camp, Mazie.

Sara