Can't Wash Away the Cafe Au Lait

The other night during bathtime, Rachel looks down at her belly and asked me, "Why do I got these brown marks all over me?" I smiled and added shampoo to her hair.

"Those are called cafe au lait marks, honey, it's part of Neurofibromatosis." I lifted my shirt and showed her mine. She just laughed and responded, "We're the same, that's cool!"

Rachel knows she is different, but she doesn't look at this as a bad thing. She lives each day to its very fullest and doesn't dwell on the hard times she has lived through, or the ones that she may face.

From the moment she was born, from the moment I knew she had NF, I knew it was MY responsibilty to help her realize that she was special. To not let NF define her or stop her.

Our conversation continued as Rachel got squeeky clean. I wrapped a towel around her and kissed her neck. She tells me that her birth marks make her cool and looked down to make sure they didn't get washed off.

"Will I have these forever Mama?" I hugged her tight and told her yes. She just looked at me, smiled said "Good, then I can grow up to be just like you!"

I just love moments like this.

Doctor Knows Best.....

Last week was filled with many doctors appointments for Bailey.... We asked lots of questions and got lots of answers. An NF team came in to examin Bailey and were quite interested in her case.

Bailey has Neurofibromatosis, and a brain tumor that first appeared to be an Acustic Neuroma or Meningioma....but a further look into this, the doctors aren't so sure.

So what is it? No one can be sure, until it is removed....but now the doctors are thinking of NOT doing a surgery. Instead they may watch the tumor for growth. Now I know these guys have YEARS of experience and probably know what they are talking about, but this just doesn't seem right.

The drs in Spokane were all set to do surgery and get the tumor out of there...while the drs here are using the watch and wait approach. Who is right? And how do we know which direction to go?

So, while Bailey is away at camp, the doctors and I are forming a plan. The first thing we need to do is rule in or out Cushing's. This is necessary because if it IS Cushing's, we can find out if THIS will require surgery--possibly coordinate it with the brain tumor surgery.

Bailey will see Endocrinology next week and have some more tests....But for now, she is having a blast at camp. Living in the moment is where we are at right now.

Getting Ready For CAMP!!!!

Bailey is so excited for her very first trip to the CTF camp! She leaves on Saturday, and has actually been packed and ready, for over a week! LOL

The camp is in Salt Lake City and the intinerary was just amazing!

*Raging Waters *The Hogle Zoo *Boondocks

I know that this will be the time of her life...and she will meet some amazing people!

Bailey - Boo, have an amazing time at camp...take it all in sweetheart! Make sure to take lots of pictures so that you can come home and share them with us!

I will miss you like crazzzzzy!!

Interested in attending CTF camp next year? Go to www.ctf.org

Neurologist, Neurosurgeon, Endocrinologist...Oh MY!

This is a big day for all of us....Neurofibromatosis is going to be met head-on today.

Bailey has been telling me about this sharp - shooting pain, on the right side of her head, behind her ear. I'm not sure if this is one of those things where she knows she has a tumor in that area, and "creates" the pain..or if this is something real. Either way, it will for sure be brought up at todays appointments.

I'm nervous for today....Not for me, but for Bailey, who really has no idea about what faces her. Maybe that's a good thing....maybe not fully understanding this is what is protecting her from freaking out.

Still she remains strong...and that inspires me!

Lastnight, we were talking about our doctors visits and she brought down something she had made for me. She took a long sleeved shirt, stuffed it with fluff, sewed all the openings shut and hugged it as she handed it to me.

"Now you can have something to hug, when I am in the hospital", she said. WOW....what could I say to that? She went on to say that she wanted to make hundreds of these "pillows" to give to children who are in the hospital, so when their parents can't be with them, they can hug it, and not be sad.

What an idea. Her heart is so soft...this girl is amazing!

I told her that we could look into creating some of her pillows, before her surgery, and she got excited! We both hugged her creation and drew out a design for the pillows. My 'Thriving' little girl....I know she won't let NF pull her down....I know what faces her, will only help her grow stronger.

We will do an update after we return from our appopintments today....THANKS SO MUCH FOR THE PRAYERS and WELL WISHES--God Bless!

Motivational Monday

STRENGTH

by Sylvia Kelly

It takes strength to be certain,

It take courage to have doubts.

It takes strength to fit in,

and courage to stand out.

It takes strength to share a friend's pain

It take courage to feel your own pain.

It takes strength to hide your own pain,

and courage to show it and deal with it.

It takes strength to stand guard,

It takes courage to let down your guard.

It takes strength to conquer,

And Courage to surrender.

I just loved this. When I began trying to come up with something to write this morning, I found it very tough. The kids were loud and distracting me.....Every 5 seconds it was "mommy" this or "mommy" that......

I made a pancake breakfast, with hot maple syrup*, in hopes that they would go outside afterwards and let mommy work---Yeah Right!

I began to think about this week...and what it holds for our in terms of being courageous and strong. I am so amazed with the amount of courage my children show me.....oftentimes, it is THEM, who give ME the courage to face what is in front of me.

To Bailey: You are so strong....so brave...so courageous! I know that sometimes what is happening is scary....But I want you to know, I will ALWAYS be there for you!

XXX