Bailey's Service Dog

Two years ago, Bailey applied for a service dog.  Fergus has been such a big part in Bailey feeling better.  Not only does Fergus detect seizures -  He helps Bailey cope with the emotional side of dealing with a progressive - and complicated disorder. 

For more information about where Fergus came from, please go to www.freedomservicedogs.org


Do you qualify for a Service Dog?  Google 'Service Dogs' and search your city for organizations that can help you apply!

To Qualify:

Be at least 12 years of age unless service dog is needed for a child with autism (see below)

Have a diagnosed physical disability, anxiety disorder such as PTSD, debilitating chronic illness, or neurological disorder affecting at least one limb

Reside in a stable home environment

Be physically and cognitively capable of participating in the process of training, up to one hour per day

Be able to independently command and handle a service dog

Be able to meet the physical, emotional, and financial needs of a service dog

Have no other dog in the home (other animals as pets are permitted)

Giving it to God

School OFFICIALLY starts for ALL of my kids today.  It's been the longest Summer in the histories of Summers.  (I'm smiling when I write this, but the reality is, I'm not kidding)  I'm sitting here in the waiting room of The Children's Hospital.

Yes AGAIN!

I'm scanning the faces of the people in this room with me and wondering what THEIR story is.  Do we have things in common (we have at least ONE thing)....Are these people as disheveled as I am?  Are THEY wondering about me and why I am there?

I LOVE and HATE this place.  The smell is the first thing to hit us as we walk through the doors, as the cafeteria is to the left.  No matter what time of day it is, the smell always makes me hungry....That familiar, over-fried, yummy smelling kind of food.

But, the busy-ness overwhelms me....Everyone always seems in a hurry to get somewhere.....And the 7th floor.  The "oncology floor"...That dreaded ride up the elevator....And the desk where you have to check-in and wear a sticker.  Red if you are healthy....Green if you are not.  

Thankfully, we have only been green once...and we were admitted and put in isolation.

I remember each and every ride up and down that elevator....And how Bailey and I like to push every button as we exit...We laugh because we know that now the elevator has to stop at EVERY SINGLE LEVEL....We haven't done that in a while.  In fact, lately the rides up and down have been pretty quiet.

Today is her 'every-3 month-MRI'...

The drive to the hospital was not your typical one.  Bailey talked to me about her fears....and told me she is scared of what the MRI will tell us....She never does this....She's the type of girl who goes with the flow...And doesn't let things bother her.  Or so I thought.

Today is tense.  During Bailey's eye exam....I found myself just waiting for the Dr. to tell me something was wrong.  A week ago, I went to the same Dr. for Braden's 6 month check, and was slammed with the news that something didn't look right.  "Something" was found in Braden's right eye.  Not a optic glioma...but "something".

We were rushed around with the doctor telling us we needed more tests....dilation, pictures, ultrasound....Then ultimately being told we needed a specialist and MORE tests.

But Bailey's appointment went well.  *WHEW*  We got the "See you in a YEAR" report and went to Rachel's appointment....The girls thought it was cool to use the SKYWALK!  Her exam took less than 1/2 hour...and we got the THUMBS UP for her as well!!

This has me feeling excited...Do good things really come in three's?

We take the SKYWALK back to the main hospital to have lunch in the cafeteria.  The girls and I did a "Ketchup Toast" with french fries and talked about how cute the eye doctor was.  (Don't worry Rich, I'm head-over-heels in love with you)

There's this weird thing about waiting rooms.  It's cold in here and everyone just looks sad.

Whatever the results are from this MRI, will be what they will be.  I am practicing the act of giving it to God....Which is MUCH easier said than done.  Having no control over these medical issues drives me crazy....I want to FIX this, and I can't.

Helpless--Hopeless and feeling bound by Neurofibromatosis.  But even in the midst of THOSE feelings, we THRIVE....Knowing that God's plan for us is being lived out.

I'm not a perfect Christian....I do have doubts and questions.  I am sure the even the most faithful of people have questions and doubts....

But TODAY...RIGHT NOW...I am comforted, in a way that's hard to explain.  Good News, or Bad News, I am confident that God will give the strength that is needed to endure it.

TODAY....Giving it to God is easy...and feels good.

THRIVE ON!

Friends Of Jaclyn

In 2011, just after Bailey was diagnosed with her 2nd brain tumor, that required immediate chemotherapy, I was told about this really great website.  I clicked on the site and was drawn into a story about a selfless little girl named Jaclyn.

Jaclyn's wish for other kids to experience a relationship with a new kind of family fascinated me.  While battling malignant brain cancer, Jaclyn was adopted by a college lacrosse team, becoming an honorary member!
A lift in spirits for a little girl, fighting such monstrous war.

Tears fell as I continued to read the story of courage and hope that emanated from Jaclyn...And while I was hesitant to sign our family up, I knew in my heart that my daughter's spirits were low and she desperately needed something that I could not give her.

When I was writing our own story, to introduce our family, it felt as if I was writing about some other child, as Bailey's diagnosis was still fairly new, and I hadn't had the chance to digest all that we were facing.

It wasn't long before we were contacted by Friends of Jaclyn and I was able to learn more about what exactly they do.

Since my daughter wasn't "passionate" about any particular sport...One was chosen for us.  A women's Lacrosse team in Denver.  I had no idea what to expect, but we were soon contacted by the team, and a first meeting was set up!

Our entire family (all EIGHT of us) was invited to the teams first home game!

Bailey was a little overwhelmed by the welcome she got, but it was amazing!  Posters, balloons, and high-fives....Not to mention a buffet-style "Welcome Breakfast".  A new kind of family indeed!  

As an "honorary member" of the team, Bailey was given her own locker, that was decorated and filled with really cool Lacrosse gear.  Bailey knew nothing about Lacrosse, but soon was invited on the field to learn all about the sport.

We weren't always able to go to the home games, due to appointments, or Bailey's low blood counts, but the team always stayed in touch with us.  I was so impressed with the genuine love that was expressed for my daughter. 

Bailey has connected with most of the team on Facebook and has truly made friends for life!

Over Christmas this year, our family was blessed by the team when they adopted us and bought gifts.  I never expected this outcome and the relationships that would form when I first contacted FOJ, and I am eternally grateful for being able to witness a transformation in the spirit of my daughter.

Thank You sweet Jaclyn, for your sweet and generous wish.  Your desire and passion to make other children happy, has changed our family forever!

Who Takes Care of Mommy?

I just got off the phone with MY Neurologist.  Yes...I do have a Neurologist...And I have been avoiding him for almost 2 yrs.  (At least that's what the scheduler said when I made my appnt)

It doesn't feel that long...In fact, I have totally forgotten the fact that he said he needed me back in a year, for a follow up MRI.

MY BAD.

Like an overgrown garden, filled with weeds...Life sometimes gets overwhelming.  Just the thought of going outside to start the "weeding process"....makes me feel like I am on an endless spin of a merry-go-round.

JUST LET ME HAVE ONE DAY....ONE WEEK....ONE MONTH

Where I don't have to think about NF, DR Appnts, headaches, tumor pain, tumor growth etc etc etc

(And this is just my kids....And Oh Yeah....I have NF too.)

My husband said to me yesterday...."My mom didn't realize you had a brain tumor."

(She's here from Washington, for a visit)

REALLY?  I've been married to Rich for 14 yrs....I've talked endlessly about NF and ALLLL the issues it has caused....Did I really never mention this?  

I rarely post updates about myself....Mostly because, I feel "fine" and my NF has stayed fairly quiet

***Knocks on Wood***

But I do in fact have a brain tumor.

I also have non-treatable Normal Pressure Hydrocephalus.

I have blogged about this, but the posts are WAY back, and have probably been forgotten about.

When my husband told me that his mom had "no idea" I had a brain tumor...It sent mixed feelings.  

1. I am GLAD that I am not one who mentions her every ailment in every conversation I have.

2.  I guess I hadn't fully explained our "situation" in a way that was understood

3.  I guess I don't "act" like a person with a brain tumor and hydrocephalus

So there it is.   Time to take care of Mommy.  

Time to be more open, more honest and get out there and pull some weeds!

After all...Even the most beautiful of gardens don't get that way on their own.

THRIVE ON!

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!

Holy Dizziness Batman!

I thought it would pass...But after 2 weeks, I decided it was time to call my Neurologist.

I'm typically the one who toughs it out when it comes to things like this...Heck, when I had mono last year, my hubby practically had to nail the bedroom door shut, to keep me from trying to get up to clean or deal with the family.  

But I have learned this hard lesson...If I don't take care of myself...I could getting sicker...then what?

I made a call to my Neurologist this week, to schedule a check up...which I know will end in being given an MRI to check the status of my hydrocephalus and brain tumor.  I am half nervous and excited...to find out the cause of my daily dizziness.  More just anxious for an answer, I guess.

The hydrocephalus I have in short is-Untreatable.  The tumor is called a lipoma, which hasn't grown in 3 yrs.  So I have no idea why I have been having these dizzy spells.

So...Monday, it's off to the Neuro to hopefully get some answers!

Have a GREAT weekend everyone!

Brain Tumors and Neurofibromatosis

We have two little friends, that came into our lives in 2010.  We never could have imagined how close we would become.  In 2012...We plan on saying goodbye to these friends!

Friends of Jaclyn and the Denver Lacrosse Women's Team!

Today was AWESOME!  Thanks to Friends of Jaclyn (an awesome charity that matches children with pediatric brain tumors with high school or college sport teams) AND the Denver University Women's Lacrosse Team, we had a day that couldn't have been more perfect!

After a LONG drive (thanks to those CRAZY Colorado drivers and an accident on I-25) We finally got to the Denver University campus to meet the team that FOJ matched us up with.  Thank Goodness, a few of the team members were waiting for us, to guide us to where we needed to be!

We headed up to the "tower" where the rest of the team was waiting, as well as a spread of yummy breakfast food!  This is where the girls introduced themselves and got to know Bailey a little.

-Riker and his plate of bacon-

-the girls-

Then the team took us on a tour of the athletics department!  It was so nice!  We got to visit the ice rink, soccer field, pool and gym.  The girls were sooo nice and took a photo with Bailey!  She truly felt like a member of the team!

My kiddos were given Lacrosse gear, and got to play on the field!

We got to "hang out" with the team before the game....We played Wii, and the team gave Bailey a bunch of fun Lacrosse stuff!  It was so much fun hanging with the team...And Bailey said afterwards, how neat it was to be a true part of this team.

They even gave Bailey her very own locker!  

It was lovingly decorated and filled with t-shirts for the entire family!  

Yup...Even my boys had fun!  They met up with the boys Lacrosse team, and were given some "guy stuff"!

Riker says, he is going as a "ZOMBIE Lacrosse Player" for Halloween.

-Playing a little soccer in the locker room-

-Woohoo-

-Go Denver!-

Our family would like to THANK the Denver Women's Lacrosse Team and Friends of Jaclyn for this wonderful opportunity!  We had the best time, and made memories that will last forever!  You made Bailey feel so special and I know that she has made friends for life!

Your kindness was felt throughout my family and we appreciate the time, love and effort you all spent in making today such a special day for Bailey!

We can't wait till the next game!