Wednesday, February 27, 2013

Freedom Service Dogs

Freedom Service Dogs

Soon...We will have a NEW addition to our family!

Last Friday, we had our appointment with Freedom Service Dogs of America and talked about the needs that Bailey has, and how a service dog would help to improve her life.  We met three dogs and instantly fell in love with all of them.

This organization is HIGH CLASS...Let me tell you!  If there was a 4 star doggie shelter...THIS IS IT!

Let me go back to the beginning and tell you what led us to Freedom....

When Bailey was first diagnosed with her brain tumors, we entered into a world that was so foreign to us.  A whirlwind of memories...Chemo...MRI's...Blood Draws....Surgery....For 2 LONG years that was our life.

Now?  We are far from being clear of that world.  The two years of chemo have taken its toll on Bailey and we are just taking a break from it all...Time to mend, and figure out a plan.

While we were at the hospital for our 'every 3 month MRI', we talked to a family who had a dog with them, with a harness from Freedom.  For me, service dogs were for those with severe disabilities, but the dog we met that day, was for a child going through what Bailey is going through.  A "skilled companion" is what the mother called this dog.

She went on to tell me how their dog helps in the family and I was immediately drawn in.  I went home a looked up the website and applied.  Bailey wrote a little bit about how a dog would help her...and I explained more about what Bailey is facing.

We got an email back....And the process began.

The best thing about Freedom...?  These dogs....Are rescue dogs!  This organization finds these amazing animals at shelters all across Denver!  Then...they custom train them, to fit client needs!  

So our appointment last Friday was a meeting to introduce ourselves and learn more about how Freedom works.  They spend 20-25,000 dollars to specially train these dogs....Then, the best part, don't charge their clients anything!  The company runs on donations and fund raising!

The heart and soul of this organization shines so bright!

This weekend, after going through some training...We will have a guest in our home.  'Fergus' was one of the 3 dogs we met on Friday, and has been offered to Bailey, based on how he interacts and fits in with our family.

The process has moved very fast for us...Which is not typically how things work.  Service dogs require intense training...Both on the dog side AND the human side.  We have circumstances that don't really require FULL-SERVICES, so a dog that doesn't need quite as intensive training just happened to arrive.

We are VERY excited to have Fergus in our home, and pray that everything works out.  Freedom Service Dogs has been wonderful during this process and we are happy to have them be a part of our lives!

Thank you so much FREEDOM...For being a part of Bailey's healing.

Thrive On!

Tuesday, February 19, 2013

You Never Know Who's Watching

Sometimes...I get caught up in my own little world.  In my own problems.  I cruise control through one day, to the next and just try to remember to breathe.  There are even some days, when Neurofibromatosis never enters my thoughts (those days are rare, but they DO happen)

I forget that I am driving around a HUGE van with NEUROFIBROMATOSIS painted across the back window...And just go about my days.  For us, dealing with NF is OUR normal.

Occasionally, someone will ask about the hard-to-pronounce word, that takes up the entire length of my back window...But for the most part, I get no comments about it.

(it needs to be re-painted desperately) 

Today...While grocery shopping at Target, I came out to something stuck on my windshield.  "GREAT!", I thought..."A TICKET!"  I wasn't parked illegally...My tags aren't expired....

When I got closer, I noticed it was a hand written note.  
First thought- Someone must have hit me and left a note for insurance purposes.
But it wasn't that at all.  It was from a mother.  A mother of a little girl who has Neurofibromatosis.  She noticed my van and wanted to reach out.  It made my heart sing....and break, all at the same time.

What an amazing thing!

THIS is what gets me excited about spreading awareness about NF.  Reaching out and helping someone through a difficult process is why God put me on this Earth...and it feels great, when someone enters my little world, and feels better because of that.

THRIVING with NF isn't just something I do at home.


Monday, February 18, 2013

Frustrated with Your Doctor?

"Why are you here?"  

I went on to explain the list of reasons why we thought we were in the rehab department of the Children's Hospital.  *Pain...Degenerative Disk Disease...Kyphosis...Pain....Spinal Fractures....Rotated Disks....Pain*

This doctor just sat and looked at me....

You know that look.  That...I-don't-really-get-you-so-I'm-just-going-to-stare-at-you-with-my-mouth-dropped-open-so-I-look-like-a complete-idiot look.

His response was that HE didn't see anything wrong with Bailey's scans.

UH-WHAT!?  Did you even REALLY look at her scans!?  

IF you did, you would see that there is PLENTY "WRONG" with Bailey's back.  

She has been referred to as "The 17 yr old, 70 yr old".

"Well -- I guess we can take a look...."  The Dr. swiveled his chair and rolled close to the computer, and booted up Bailey's most recent MRI scans of her spine.

His eyes got real big and he scratched his wrinkly chin....He lets out a heavy sigh and looks over at Bailey...who is sitting on the exam table with that face that tells me she is really REALLY tired of seeing so many doctors.

The doctor wheels closer to me and asks me what kind of plan did I expect him to come up with.....

(Gee...Isn't that why YOU became a doctor?  So YOU could tell ME what kind of plan could make my daughter better!)  

I seriously should know better than to put my hopes in doctors.  But I did.  I always do...And I am always let down.  

For TWO years, we have ridden this roller coaster of placing hope in doctors....In toxic medicine...with the hopes that Bailey will get better.  She's not better.

For now Bailey won't do rehab...She will try stronger pain meds and figure out some school issues and try to live above the pain she is in.

I left the hospital frustrated.  But Bailey....She left asking if we could get an ice cream cone for the drive home.


Wednesday, February 6, 2013

Neurofibromatosis on BONES!

I was watching this episode of Bones with a lot of anticipation.  I kept waiting and waiting for mention of 'Neurofibromatosis' and it came in a way I didn't expect.  I wasn't disappointed....But I wasn't overly thrilled either.

'NF' was portrayed as a sick persons disease, that "Anyone can get" (which if I didn't know anything about NF...I would think that I could not just "get"...but "catch").  

It rubbed me wrong.  It was like clever  not-so-clever product placement.  It felt forced.  It felt like the actors were just reading the back of some pamphlet.

While I am VERY HAPPY that Neurofibromatosis is getting some attention, I think we still have work to do.

And what was up with the whole keeping the secret of helping these "sick kids"...??

I get the idea of doing great things, without getting the attention for it....But, it just seemed like since we are getting NF OUT THERE and TALKED ABOUT....that we didn't need the Secret keeping story.

Anyways....That's MY 2-cents worth.  Let me know what YOU thought!!  <--Link will take you to the on-line episode

Tuesday, February 5, 2013

Customer Service? Phooey!

I know I know...This is NOT a customer service blog....But with TWO separate things that have happened in the last TWO days...I have to vent!

I have been sitting home for the last 4 hours, waiting for my "service window", to get our washing machine repaired.  I re-arranged my entire day...Including getting someone else to pick up my daughter from Kindergarten.


8am....9am....10am....11am....THEN 12pm passes.  No call.  No repair guy.

I consider myself a fairly patient person....FAIRLY PATIENT.

But nothing and I mean NOTHING irritates me more that people who disrespect my time.  

I call the 1-800 number to see what's up.  And here's what I got:

SEARS- "Ohh I am soo sorry for the inconvenience.  Our computers are down, so the repairman does not have access to his schedule." 

ME- "Seriously?  So he's just sitting around doing nothing?"

SEARS- "He usually has a print out of his next appointment, but since the computers are down, he has no idea who is next."

ME- "That's a pretty lousy system....Do you realize that people re-arrange their entire day, just to be home for the FOUR hour window you give them?"

SEARS- "That's really not our problem ma'am and there is nothing we can do."

ME- "Nothing you can do, for the people whose days got screwed up because of YOUR computers?"


Called back and was told the same thing.... "WE CAN RE-Schedule!"

Ya...So I can spend ANOTHER day, waiting!  I politely asked if the NEXT repair guy could stay and do the 14 loads of laundry I have sitting in my laundry room.

I was told I would get a call back to see if that was possible.  SIGH!

And so yesterday...My hubby and I decided to try the new LARK BURGER, that opened up just down the street from us.  I was pumped...and ready for a delicious hamburger!

The place is cool, and trendy, with a basic menu that doesn't require a #2 pencil or good test taking skills.

We order and find our way to a small table, in the back-

A few re-fills of raspberry diet coke, using their new state-of -the-art soda machine later....and we realize that people who ordered AFTER us were now tossing their garbage and leaving.

"How long ago did we order, hon?"  I ask my hubby.....

A HALF HOUR had gone by......

We flag down someone who was wiping down a table and mention our concern....

"Ohhh We don't even have record of order # 26...."


10 minutes later....We get our order, along with a shallow apology, and 2 girl certificates to come back.

Uhhh...No Thanks.   I know things happen, and people screw up....But GOOD GRIEF, at least act like you care that we waited over 45 minutes for a SO-SO hamburger.

Where oh where has decent customer service gone?

That's my Tuesday vent...It felt good!

Now back to your regularly schedule blog.......................

We're OFF Chemo!

You'd think we'd be celebrating.  Going OFF chemo is typically one of those things where we leave the hospital excited.  Hopeful even.  But I have a hard time feeling anything but fear.  Now don't get me wrong...I believe we are doing the right thing...But our "safety net" has been pulled from us.

Bailey has now been officially OFF chemo for 2 weeks.  The color is back in her face, she has more energy and the bottle of Zofran hasn't been touched.  Good news for Bailey came Friday, when the doctor came into the exam room and read the MRI results.


I never thought I could love a word so much.

Stable means that we can breathe for the the next 3 months.

Sort of.

This is the first time, since both tumors were discovered that we won't be on chemotherapy.

My "friend" FEAR, is back.

She comes around every now and then, and I have to remind myself, that I am the in control.  I have the ability to release the choke-hold it has on me.  I can tell FEAR to "take a hike!"  But sometimes this isn't easy....I get scared all the time.  Sometimes FEAR wins.  Especially when it comes to the health of my children.

Even while fearful...Of "What if's"....We aren't sitting around letting it swallow us.  
We are USEFUL in our FEAR!

We THRIVE in Spite of FEAR!