Thankfully Angry

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.

THRIVE ON!

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!

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:

http://www.michellekrollphotography.blogspot.com/

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 

Exercise

Depends on the day

Walking to and from the school- Twice a day

Gym 30 min on treadmill

Kettle Bells-100

Weights

Bike 20 min

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