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.