Monday, December 31, 2012

2012- A Year in Review

It's hard for me to look back at 2012.  Our family has come so far, yet it still feels like we have been standing still for so long....Even sometimes heading backwards.  Discouraging, to say the least.

We started 2012 with news that Bailey's tumors did not respond to chemo, so ANOTHER type of chemo was ordered, with the hopes that THIS would be 'the one'.  Almost a year later...her tumors have not moved...In fact, they are 'slightly bigger'.

It hasn't all been bad, but with our focus on Bailey, it's hard to see past all the medical issues she has been dealing with.

On a high note:

Since February 2012, I have lost over 70 pounds.  I have gone from my heaviest ever, to the lightest I have been since before my pregnancy with my 8 yr old son.  Low Carb and visits to the gym (I hear my hubby laugh), as often as possible have been what has worked for me. :)

I also volunteered at Camp River Ranch.  (A camp for chronically ill and terminally ill  children) I spent a week at this camp that is about 3 hrs southwest of where we live.  It was one of the most rewarding weeks of my life.  Bailey has gone to this camp, for the last 2 yrs. We both cannot wait to go back!

AND....I got to go on a trip to California, for a family reunion!  My brothers and I haven't been ALL TOGETHER for over 10 yrs!  It was pretty awesome - to spend that time with them!

Overall, it's been a very busy year, with some definite highs and lows...But we are hopeful as we go into another New Year, that some progress will be made medically.


Thursday, December 27, 2012

Sleep Study

2013 isn't looking like it will be starting off with "less", like we had hoped.  

I felt so bad for Boo, all hooked up to wires and having to sleep flat on her back.  Not to mention, the nurse who barged her way into the room every half hour.  (Didn't she realize this was called a SLEEP STUDY???)

No actual, restful sleep happened for either of us last night.

But enough sleep for us to be told that Bailey's O2 dropped pretty significantly and she will likely have to be started on oxygen soon.   "SOON" will be tonight.

We hadn't even made it half way home, when my phone rang.  It was Bailey's referring doctor who told us that Bailey has pretty severe apnea...And oxygen and CPAP will be ordered and started immediately.

We became official patients of the Sleep Clinic and will likely have more "sleep studies".

So, we are waiting on the medical supplies to be delivered and for us to be taught how to use them and what to look for, when and IF there are issues.

Our HOPE for 2013 to have less medical issues, seems to have faded already and the New Year hasn't even begun yet.  But like anything...we will take this news one day (night) at a time and THRIVE ANYWAY!

Sunday, December 23, 2012

'Twas the Night Before the Night Before Christmas

So I took my 8 year old son out shopping today.  I swear every year that I am going to stay away from the stores, unless it is absolutely necessary...But he was begging....with his big blue eyes...."Mommy PLEASE, can we go spend my Birthday money?  I want to spend it on Christmas gifts for everyone!"

My son.  He is so sweet and thoughtful.  

So...we went and braved the local Wal-Mart store.  On the way, he tells me that he has 36 dollars and 53 cents to spend....Then he tried to figure out how much that would be PER person....."A little over 6 dollars per kid Mommy!"  He said with excitement.

So we shopped.



My son is JUST like his father.  Analytic.  Precise.  And wanted to be sure he spend EXACTLY the same on EACH kid...."to be fair".

It took us about 2 hrs to get it just right....And I had the best time watching this little guys brain work.

He was so thoughtful in his choices...."Hello-Kitty for Brooklyn", "Girly, Smelly stuff for Riley and Bailey", "Flash-Lights for Braden..(Cuz his old one broke)", "Hair stuff for Rachel"..."And some dinosaurs for ME".

I loved being in the moment with Riker.  He and I and talked the whole time, without breathing, I think.

We left the VERY BUSY store with our treasures and headed home.  
"I can't wait for Christmas, so the kids can see what I got them!" He said....

Time with my son.  Sooo Precious.


Thrive On!

Tuesday, December 18, 2012

Thriving with NF goes Mobile!

Today was AWESOME!  Why?  I got to spend the morning with my oldest daughter.  She and I were invited to speak to 2 classes about Neurofibromatosis. These classes are learning about genetics and chromosomes...So the teacher(s) thought it would be perfect for Bailey and I to talk about our experiences living with NF.

Bailey made a short video about NF and showed it during our talk.

I was so proud of my young THRIVING GIRL.  She hasn't let NF or the bad news we got about the complications she is experiencing  get in her way...She is the true definition of what it means to THRIVE!

Thrive On!

Monday, December 17, 2012

Thrive Thrive Thrive

Thrive Thrive Thrive

As I write this, Bailey is laying in the other room undergoing yet another MRI - this time focused on her back.  
A few months ago, we discovered that Bailey has Degenerative Disk Disease.  "The back of a 70 yr old" our doctor told us, half joking. 
After months of failed attempts of physical therapy, it is clear that something MORE needs to be done.  But what?  We have been told there is no surgical "cure" for DDD.  Therapy has seemed fairly useless, and medications consist of narcotics, which I really don't want my 16 yr old to rely on.
Several Xrays later...We have learned that Bailey has several stress fractures, a few rotated disks and possibly the beginnings of Osteoporosis.  This...To go along with 2 inoperable brain tumors...And possibly a failing liver.

Me? I am sitting here thinking of ways to stay positive.  To focus on all the good that surrounds us.  There is SO much good.  I see the smile that seems permanently cemented on Bailey's face...No matter how much she is facing.

Finding the good is not easy to do in light of the news of Sandy Hook Elementary. I've spent the weekend crying over the many lives that have been forever changed by that senseless act.

Sometimes I let myself get a little too wrapped up in events like this-  I allow tragic events like the one on Friday....Or the trial for Casey Anthony affect me in really negative ways.   I wish I could rescue every little child in the world.  But then I hear the buzz/kachunk of the MRI, and wish I could just save my own.

"Thrive, Thrive, Thrive." 

I admit, it sounds silly. Pollyanna, perhaps. But when I close my eyes and silently chant this simple word over and over.  I feel better.  This word...Has become very important to me and my family....Especially when things aren't going the way we would like them to - which seems to be nearly every day lately.

People have told me "Sure, it's "easy" to THRIVE when things are okay with you and your family - you should try living MY life."  And yes, when the MRI reports are "stable", and the side affects of chemo are at a minimum, it IS easier.

 We haven't seen those days in months.

 Today I feel like I'm stuck in the middle of the ocean - trying to swim for shore, but with each stroke towards home, I'm slammed backwards by one wave after another - constantly pulling me back into the ocean.

I'm Exhausted.

Thriving doesn't always mean spending life with a smile on my face. That doesn't equal Thriving. Often it equals lying. Thriving isn't even knowing you'll make it to the shore. Thriving is CHOOSING to keep swimming, to stay above water anyway you can. It can mean resting and floating for awhile. It means never choosing to just sink and drown yourself in sorrows, pain and fear.

I work to be a lighthouse in the world for NF, and a life preserver, or at least a piece of driftwood, for my family to hold onto as we go through this current pain. Perhaps, if enough of us band together, we can build a boat - and even if we never hit shore, we can party together through life.

Just keep Thriving. 

Dori :D

Saturday, December 8, 2012

Thank You Make-a-Wish

What a really cool day we had yesterday!  My 3 kids that visit the Children's Hospital for Neurofibromatosis were invited to the Make-a-Wish Christmas shop!  

It was wonderfully busy with children who have been granted a make-a-wish, or children that are being treated for cancer, tumors or other disorders.  It was both exciting and sad to see how many families are dealing with 'something'.

These families weren't hiding ....They were out enjoying the Holiday.  They were giving their children something to look forward to.  Giving them an opportunity to live and experience!

Each child there, got to decorate a bag, that would soon be filled with presents that they would personally pick out and wrap!

Thank you to Make-a-Wish of Colorado, for hosting such a wonderful program!  My children were delighted to come home and place the gifts under the Christmas tree.

Friday, November 23, 2012

Thankfully Angry

Photo: A lovely Thanksgiving blood draw

Does that even make sense?  Thankfully angry?  This mix of emotions has me confused too...But it's the best way I can describe how I feel.

I am THANKFUL that we aren't dealing with worse...Even though what we have, is pretty bad.  I know that things-could-always-be-worse.

But I am angry that we are dealing with a monster that has no weak spot.  No vulnerabilities.  I am tired of hearing "Nothing can be done"....I am tired of continually feeling helpless.

Our appointment obviously didn't go well.  New Xrays of Bailey's back showed worsening of the degenerative disk disease and also showed many stress fractures.  We were asked over and over, if Bailey has had any trauma to her back...Which she hasn't....So this makes ANY explanation impossible.

In 2 weeks, Bailey will have a MRI of her back, to hopefully get a better look....

This Thanksgiving we have so much to be THANKFUL for....It's these things that we will focus on as we wait for answers....and maybe some treatment.


Friday, November 16, 2012

Risky Business

"Too Risky" was Dr. Handlers words as he looked at Bailey's most resent MRI.  Surgery COULD happen, if we wanted all the complications and side affects...But it is NOT recommended at this time. And if it WAS done...couldn't guarantee to take away Bailey's symptoms.

I was sort of relieved....and sort of disappointed to hear this news.

Bailey suffers from Neurofibromatosis type 1....But she has an unusual case because she also has Acoustic Neuromas.  Tumors of the auditory nerve that are more common with Neurofibromatosis type 2 (a similar disorder) 

There are very few people living with NF1 that also have NF2 tumors.  I have met MANY people who claim to have BOTH NF1 and NF2, but do not actually meet the criteria for a TRUE diagnosis.

For a diagnosis of NF2, the patient MUST HAVE Bilateral Acoustic Neuromas, 
as pictured in the above still, taken from Bailey's most current MRI.  

We scan Bailey every 3 months to check on the above tumors....
And the MOST DANGEROUS tumor that is located on the Corpus Callosum: 

Bailey is taking 5-7mg of Chemotherapy and continues to THRIVE, with her positive attitude.  Her symptoms vary from day to day, but generally speaking, she is doing well!

2 wks ago, we started Lipitor, due to the side affects of chemo...making Bailey's cholesterol sky-rocket.

Thank you for all your prayers
One Day at a Time!

Thrive On!

Tuesday, November 13, 2012

Our Photo Shoot with Michelle Kroll

I have to admit...I was nervous about our photo shoot.  With SIX kids, doing ANYTHING as a group has its risks of going completely wrong...And this day...was starting out kinda crazy.

But when we got to Michelle's photo studio....I was relieved and impressed!
Michelle is a mom, like me.  She knows Neurofibromatosis, like me.  
And she graciously offered to photograph my family, to give back to those who help to give NF a voice.

What a GIFT!

We got started right away....Snapping the most amazing pictures we have ever gotten!

Thank You So Much Michelle...You captured the most precious pictures....Words would never be enough to tell you how much I appreciate your time/effort/and patience!
If you would like to see more of Michelle's AMAZING work
please click the link below:

Monday, November 12, 2012

Low Carb Diet and Neurofibromatosis?

This is an opinion based blog post.  
All results are varied and unique to you.
Please seek a doctors advice before beginning a diet / exercise program. 

Winter 2011 
(200-something pounds)

I started 2012 out FAT.  Well....I've always technically been fat...But when I stepped on the scale in February, I didn't have a pregnancy to blame for the number that came up on the scale.

Our church began the F.A.S.T. program - So my weight was now a matter of public records and I couldn't have felt more ashamed.  Thoughts of Middle School came flooding back.  My gym teacher had everyone step on the scale- for "PHYSICAL FITNESS MONTH".

All the girls peeking their heads to get a look at how much everyone weighed....And I was first in line. 
"God - Save me from this torture!"

I was laughed at.  I was called every fat name in the book....And now that the other girls knew my actual weight....I was called "Buck-Fifty", which thankfully, not everyone understood.

20 years later...
I was MUCH MORE than "buck-fifty", and I had excused my weight on anything I could find...KIDS, STRESS and even having Neurofibromatosis.  I've lost and gained weight many times and felt awesome when I'd shed the pounds...I even got a my lowest point ever, just before I found out I was pregnant with my now 7 yr old son.... But the pounds always came back and so did the excuses.

Growing up, my weight has been like a coat of armor--It protected me from boys liking me...It made it so my bumps weren't so obvious...So, in my own little way, I actually preferred being fat.  And as an adult, it had become accepted...Normal.

It wasn't until I became a mother, that I realized how much being fat was affecting everything in my life.  And when that number popped up on the scale in February 2012, I was hit with the realization, that my armor MUST come off, if I was ever going to be truly happy.

I began with seeing my doctor....And when THAT scale, confirmed what the other scale said....I KNEW it was time to change my life!  I had a physical and blood work done, and was given the "OK" to begin my new life!

That day...My husband and I began low-carbing. 
I have researched low-carb diets and tumor growth and have found conflicting information, so I decided to keep track myself and note any differences with my current tumors and/or growth of new ones.

Here's what I found.  Low-carbing has had NO SIGNIFICANT affect on my NF.  If anything, my tumors actually seem smaller than they were BEFORE the diet.

Here's another cool side affect of Low-carbing....

I've lost more than 70 pounds!

Fall 2012
Down 70+ pounds!

I can't express how much better I feel...I have joined a gym and get there as often as my busy life will allow me....And I am DONE with excuses.  I am DONE with wearing armor.

If I am going to SPEAK a THRIVING attitude....I am going to LIVE a THRIVING attitude!

I still have about 25-30 more pounds to lose...And it's happening. :)

If you want to THRIVE....You have to get up and JUST DO IT!  You can't give excuses, because there will ALWAYS be a 'good reason' for not doing something.

Typical Day
Breakfast- 2-3 Eggs with Salsa and a sprinkle of cheese
Lunch- Spinach salad with tuna, hard boiled egg and a low carb ranch dressing, broccoli, and a sprinkle of cheese
Dinner- Chicken breast with skin, side salad, hard boiled egg 

Depends on the day
Walking to and from the school- Twice a day
Gym 30 min on treadmill
Kettle Bells-100
Bike 20 min

Tuesday, November 6, 2012

More PT....More PAIN!

We were told 5 weeks ago, when we started PT, that there was nothing the therapist could do, to help Bailey.  And she was right.  So not only do we have to meet with the Neurosurgeon, to address a growing Acoustic Neuroma....We now have to go back to Orthopedics to see what...if anything can be done for Bailey's back issues.  Click HERE if you would like to read more about these issues.

We tried.  We gave PT a fair shot...

Still Thriving 

Thursday, November 1, 2012

Happy Halloween?

I always look forward to this time of year.  The changing of seasons brings me to a place where I feel good.  Hopeful even.

Halloween has always been a favorite of mine...Knocking on door after door....And being given FREE candy?  Who wouldn't like this?!

As a kid, my older brothers were responsible for making sure I I didn't get lost on Halloween night... And we'd stay out for HOURS.  Our pillow cases stuffed full of candy, by the time we returned home...Where we would then dump our stash all over the living room floor and play the trading game.

M&M's for Snickers bars....Tootsie rolls for Milk Ways....

We didn't worry about strangers....And in our childhood world, life was pretty safe.  It's not that there weren't bad people, who did bad things...Because everyone knew those people were out there...But in our minds, we were untouchable.

I have become fairly invested in the story of Jessica Ridgeway.  The 10 year old girl who was snatched while she walked to school.  She was murdered....Then dismembered and tossed away like garbage.  Jessica's story hit our community hard....and continues to.

She could have been ANYONE'S child.

This senseless act has made such an impact on the community that this Halloween was different than any other I have ever experienced.

I KNEW that we were going to the do "traditional" door-to-door thing...To me....Life will always have bad in it.  It's not like I walk around completely ignorant.  But I refuse to allow all that bad, stop me from living life.

Last night, my kids and I walked our neighborhood and I felt so sad as I looked around at the empty streets, and darkened doorsteps.

The handful of houses that DID have their lights on, acted surprised when my children excitedly ran up and knocked on their doors!  So surprised, that MOST gave out handfuls of candy. (which of course, my kids accepted with no problem)

Is it that people don't want to move on?  No disrespect meant at all....But LIFE has to CONTINUE!  If it doesn't....What a waste!  I refuse to live my life in fear that something tragic will happen....I refuse to teach my kids to be scared of going outside.

We can teach our children (and ourselves) to be cautious and aware...WithOUT instilling fear!

So...We will (as long as it remains legal) to Trick-or-treat.  We will continue to LIVE.

And of course...We will continue to THRIVE!

Happy Fall!

 Brooklyn as "Eeyore"

 Bailey as "The scary candy hand-er-outter"

 Rachel as a "Vampire Princess"
Watch Out Bella!

 Riker as "Ninja Warrior"

 No surprise here...Riley as "Death"

The Gang...Braden as "Cowboy Kruger"

Monday, October 22, 2012

Monsters Under the Bed?

Remember when the "monsters" were under the bed??

A little history...

When I was 11 years old, living in Newbury Park, CA, there was a killer on the loose who was breaking into homes, late at night and killing its occupants.  The story was all over the nightly news...And I remember police and reporters urging people to lock their windows and doors....

But to me...This was just news.  Nothing was going to happen in OUR neighborhood!

I remember getting dressed, and having cereal for breakfast.  Step-mom pushing us to hurry up so we weren't late for school.

I opened our front door, to a swarm of police cars, fire engines, and 2 ambulances.  I slowly walked out onto my porch and watched a scene I never thought I would ever see.  My very first thought, was that a movie was being filmed....But there were no cameras....No movie crew.

My brothers piled out of the house and stood with me on the porch...Just watching.

There was blood on the front porch of our neighbors house and people running in and out.  My brothers told me that this HAD to be fake and ushered me in to the car.

I went to school that day...Believing that what I saw was INDEED fake.

It wasn't until THAT afternoon when I arrived home....and the police and investigators were still at the house....That I thought something really bad happened.

We were told to stay inside our homes.

That night on the news....The reporter stated that the serial killer had "struck again"...and images of my neighborhood were shown.  I was confused and scared.

I was so scared in fact that I began sleeping under the day bed, with the trundle pulled in beside me, so that I was totally hidden.

How could someone break into peoples homes?  How could someone take the life of someone where they are supposed to feel safe and protected?  I was so scared that this person would come back to our neighborhood and get us too.

We moved away a few months later...

Richard Ramirez was caught and put in jail....I felt a little safer.

27 years later, it seems the more things change, the more they remain the same...

With the recent kidnapping and murder of Jessica Ridgeway....I can't help but be extra protective of my children.  It seems the schools are becoming extra protective as well....(which is a good thing)  But where do we draw the line?

My 7 yr old son who is in 2nd grade has come home every single day since Jessica's body was found terrified that THIS is going to happen to him as well.  (My children do not know of the above story, nor do I plan on telling them)

But this is how I found my son sleeping over the last few nights....

Under his bed, tucked away.  He says, "Teachers say kids can even be taken out of the beds - so when the bad guys break in our house, they won't see me."  This about tore my heart out.

We can educate our kids...WithOUT instilling fear in them. It's important we communicate to our kids the dangers of life, that we as parents do our due diligence and keep them out of harm's way. But it's also important our children feel safe, and not take on the stresses of adulthood before they are ready.

I don't know how long it took me before I stopped sleeping under the bed. One day it just happened. I hope Riker feels safer sooner than I did. It's my job to make sure of that - to ensure he learns not just to survive, but Thrive.

Tuesday, October 16, 2012

It Starts....Physical Therapy

We went into Bailey's physical therapy appointment excited.  Hopeful even.  But as Bailey's history unrolled itself in the chart....Those good feelings quickly deflated.  

Do you know what's worse than a doctor telling you that 
"there's nothing that can be done to help your child?"


Nothing is worse than hearing that.

Bailey has Neurofibromatosis.  2 inoperable brain tumors. 
A year and a half on chemo...AND Degenerative Disk Disease.

While SOME people with DDD benefit....even IMPROVE with intensive physical therapy, this is not the case for our 16 yr old daughter.  It seems Bailey has a more complicated case of DDD, than first thought....And our therapist tells us that no amount of PT will help Bailey.

But...There ARE some good things that came out of yesterdays appointment.  Bailey has a couple rotated disks, that CAN be improved with PT...And the therapist offered "as much PT as Bailey can handle" to help increase core strength-Which MAY help with the pain Bailey experiences.

So...while it sucks that nothing (right now) can be done for the DDD...We ARE hopeful for the potential answers that may come in the next few months.  We don't give up, and we continue to THRIVE.  
Even when  things don't go entirely our way.

Tuesday, October 9, 2012

Update on Chemotherapy

For those that have been asking....An UPDATE on Bailey:

In March 2011, we discovered Bailey had (still has) a very dangerous brain tumor.  She began receiving chemotherapy immediately after this discovery and were confident that the carbo/vincristine combo would halt this tumor's growth....Unfortunately that did not happen.

The tumor went from a regular M&M size, to a peanut M&M size.....After 3 months of treatment.

We then switched to slightly more aggressive chemo (Vinblastine) And Bailey stayed on that for the next 9 months.  We had to play with the dose a little bit, because Bailey showed signs of extreme sensitivity.  (I was told by our Neuro/Oncologist that Chemo sensitivity for kids with NF is VERY common)

This tumor has stayed relatively stable during that 9 months, only changing very slightly--

Our 52 week treatment plan was over....But we still had a brain tumor, that was very much a part of Bailey's life...and it didn't seem to be going away....So we decided to continue on with a newer chemo that Bailey would take orally on a daily basis.

March 2012 we began Everlimus (Afinitor) 5mg.

Bailey's port was surgically removed and we were excited to be a part of a select group that was taking this "new" chemotherapy, and hopeful, because its reputation had been really good in treating NF related tumors.

Our "every 3 month MRI" in May showed 'no change' in the size of this tumor.

In August this tumor took a turn.  While still measuring the "same"...the tumor has changed shape.  No one can really tell me what this means exactly...Although I was told that it either means it is getting ready to shrink, or grow.

During the time on Everlimus, Bailey's cholesterol levels have sky-rocketed.  The Drs are keeping a close eye on this, as am I- at home, with diet and exercise-

We get Bailey's blood levels checked once a month and in September the levels indicated the chemo levels were 'too high'......In October, they were 'too low'.

The Drs. decided to increase the dose from 5mg, to 7.5mg and that's when a whole new set of symptoms began.

*Mouth sores
*Leg sores
*Extreme body aches
*Mood changes
*Stomach aches

Our next MRI is in November....Those results will determine what we do next.

We live our lives 'in the moment'...We have no choice--
And when happiness comes---we rejoice!

When hard times hit-as we know they will--
We look to our Father--and stay calm and still. *Kristi Hopkins


Sunday, October 7, 2012

Jessica Ridgeway

My heart just breaks when I hear about these kinds of things.  I have kids (six of them) and I am constantly paranoid about something like this happening to them.  Jessica Ridgeway is your typical 5th grader.  She was on her way to school when life changed forever.

A 3 block walk shouldn't be anything to worry about...Heck, I send my 4 elementary kids (walking about 3 blocks) to school, not even thinking about it....But on THIS day (Friday October 5th) Every parents worst nightmare came true.

Jessica never made it to school....Her short walk to meet friends was interrupted.

Her mother...Who works nights, missed the call from the school, notifying her that Jessica was absent.

I have read comments from those criticizing the school for not doing more....I know it's easy to try to place blame SOMEWHERE...But the school did what ANY school does.  There was NO WAY for the school to know that Jessica was absent for anything more than a doctors appointment.

They left a message, and the day continued on....

Hours went by...And when Jessica's mom got the message from the school, she called the police.

It is now late into day 3 and searchers have found no hints of where Jessica could be.

So what happened?  I play the scenario out in my mind over and over.  Was she lured close to a persons car, who then forced her inside?  Did she go willingly with someone she thought she could trust?

How can parents protect their kids?  Does "Stranger Danger" really work?

I say it only works, if you constantly and consistently help your child understand safe and unsafe situations. I know that when I asked my almost 10 yr old "What is a stranger?"  She responded with, "Someone who is mean and ugly."

That surprised me--

"What if a nice looking, friendly person came up to you...and wanted you to go in their car....?"

Confused, my little girl looked at me---

So we had a discussion-- AGAIN, about what a stranger is.

*A Stranger is ANYONE you don't know.
*NEVER and I REPEAT NEVER get into a car with someone, unless Mommy or Daddy specifically say it's ok.
*If a "stranger" comes up to you and starts talking....Find another adult. (We talked about when one on one  - adult to child conversations are at school, drs appnts, counselors office etc)
It's inappropriate for an adult to ask a child for help...Like finding a "lost" dog, asking for directions, or offering candy if they go for a ride.

Awareness is the key to keeping safe.  The more you talk about what "Stranger Danger" means, the more your child will know the difference between safe and unsafe situations.

I hope and pray that Jessica Ridgeway is found safe....Please keep your children safe and talk to them...Test them...And make sure you know where they are and who they are with....Don't just trust the situation...Take the extra steps to KNOW the situation...

Thrive On Jessica...Our family is praying for you! 

Friday, September 21, 2012

What Makes You Think You Have NF?

I just got back from the Drs.  I swear, I have seen the Dr. more times in the last 6 months, than ever before in my life!  This wasn't for NF related stuff, surprisingly.

I have ulcers....Thanks to a little bacteria in my blood called H-pilori.

I've been having a lot of ulcer-related symptoms, so I thought I'd go in and get it checked out.

The tiny office I go to was swarming with other doctors...Most of whom I have never seen before....Some sort of conference was going on, I'm not sure.

Anyways....I get to my room (but first stopping to weigh myself...And I have to say that I was actually excited to step on the scale!  I have been TRYING to lose weight actively since February of this year and been pretty successful at it!)  
The nurse tells me to strip down from the waist up and wear the lovely paper napkin shirt...So I do as I am told and sit on the exam table for what feels like an hour....

Wait Wait Wait

A nurse pops her head in to ask me if it would be alright if one of the visiting Drs comes in to "have a look at me".....She goes on to say that "Neurofibromatosis is SOOOO rare, that some of the doctors were wanting to see me....." 


I smile and say- "SURE!"

A few minutes later, a handful of nicely dressed doctors come into the room, squeezing around the exam table.  I shake hands with a few and smile my sweet....(great I'm a guinea pig) smile.

"So...What makes you think you have Neurofibromatosis?"

HUH?  Was I seriously being asked this?

I bite my lip and gulp down a lump in my throat.


I open my paper napkin shirt and showed them WHY I think I have Neurofibromatosis.

Yeah...So I flashed these doctors.  What was I supposed to do? :)  (Krazy Kristi winks)

The drs asked if they could exam my back as well.......I tell them, 
"Well it's not nearly as attractive as my front, but go ahead!"  :)

I gave a brief family history ---"Mom, brother....."

One doctor told me that NF was REALLY rare, and it was nice to meet me....

I explained to HIM, that Neurofibromatosis was THE MOST COMMON GENETIC disorder know to humans....and that it was NOT so rare.  Impressed -The Dr again shook my hand.  I thanked him for his willingness to learn....then everyone scooted out.

Ok...?  I was alone again for a few minutes, when my regular DR came in.....

I left the doctors office feeling....I don't know....Weird.   Did I teach those drs anything?  Would any of them think of NF differently?  Could I have done MORE?

Anyways...I put myself out there--I guess THAT'S what matters.


Tuesday, September 18, 2012

Happy Birthday to my Girls!

A month after I married Rich, I discovered I was pregnant.  It was a shock, but he and I prepared ourselves for our little bundle of joy!   Half way through my pregnancy, I found myself in the hospital facing Riley's premature birth....But thankfully, the swift action of my obstetrician stalled my labor and surgically put in a cerclage, to keep my cervix from dilating.

I was placed on strict bed rest for the next 4 months.

At 38 wks ...The Dr. removed the cerclage and expected me to go RIGHT into labor.  HA!

Riley Elizabeth waited another 2 1/2 weeks, before my OB decided I was WAY too swollen and uncomfortable to continue with the pregnancy.  She induced labor and it would be another 12 hours before my baby decided to give in, and be born!

This is Riley.  She is stubborn.  She is smart.  She is funny. She is AMAZING!

I love you SOOO MUCH!

Happy 12th Birthday!

I had JUST driven a 20 foot moving truck from Washington to Utah.  I was 8 months pregnant and had gained about 50 pounds.  I was extremely uncomfortable.  After the move, I immediately set myself up with the OB that had delivered Riley and Rachel.

It was THIS pregnancy when Neurofibromatosis slapped me in the face.  
NF was recognized for the first time in my 33yrs....

Brooklyn's "due date" was September 11th 2007.

On September 18th....I had my OB check up and the DR took one look at me and told me that it was time to get this baby OUT!  I immediately went home to talk to Riley...Her response was so cute...."Well Mom, I know you can't exactly HOLD the baby in....So I'm fine with having my baby sister share my birthday...Go, give birth."

I was determined to labor with OUT pain meds, just like my other births...But Brooklyn's heart rate started to slow down, with my contractions.  We waited an hour, to see if I would progress fast enough, but that never happened.

Brooklyn Grace was born via emergency c-section (my first csection) and was perfectly healthy. 

This is Brooklyn.  Always doing things HER way.  Smart.  Funny.  And AMAZING!

I love you Brooklyn Grace--Happy 5th Birthday!

Tuesday, September 11, 2012

September 11, 2001

I know that there will be endless blog posts from people about this day.  There isn't much I can say, that others haven't already beautifully expressed.  But this is a day of remembrance....A day to pay tribute to the lives that were lost, and the lives that continue on, in the shadows of a devastating tragedy.

I will make this short.  We all can remember where we were on this day, and what it felt like to watch this unfold...So today, just take the time to give THANKS and send a prayer up.  Do a positive and kind gesture to a complete stranger....Something that makes a difference! :)

We can't change the past...But we CAN give hope to our future!


Monday, September 10, 2012

4th Annual Denver NF Walk

Do you ever feel alone having Neurofibromatosis?  I know that there are times when I feel so consumed by everything we are going through....So alone and isolated with all that NF throws at us, that I forget that there is a whole community of NF families out there...Who are going through some of the same stuff we are!

September 9, 2012 was the 4th Annual walk for Neurofibromatosis Awareness. 

You may feel alone, isolated, afraid and angry...But it's only when you step out of those emotions, that you can see a world who suffers with you....And it's when you step out that those emotions and feelings are replaced with HOPE & HAPPINESS!

Social media, like Facebook and message boards are AWESOME....And I have nothing bad to say about them...I use them every single day!  But, if that's as far as you take "reaching out"...You are missing out on a world that is ready to embrace you, and all of the challenges you are facing.

REAL LIFE support groups are ALL around you!  

WWW.CTF.ORG is a great first step in finding a local NF group.  If you don't find one in your area....Contact CTF and ask about what it would take to start a new group.


If you have the will and the motivation -- ANYTHING can happen!