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

Bailey

Bailey and I saw Dr. Weiss in Arvada yesterday and I have to say....I was impressed from the moment I shook her hand. She noticed the bracelet on my arm, and asked about it. I told her it was for Neurofibromatosis Awareness. She was impressed with the fact we are a family who 'THRIVES with NEUROFIBROMATOSIS'.

Our visit consisted of the doctor taking a full history and asking many many questions about what Bailey is experiencing. (The brain tumor, the Cushings disorder, hearing loss, vision history, depression, weight gain) I felt both bad and good.....Bad because we had this huge list of medical issues, and good because this doctor was listening to me! She wasn't rushing me or making feel like I was just one of many.

Bailey had a full physical (head to toe)--and the doctor noted some concerns. First she feels that Bailey may have an estrogen deficiancy. I won't go into detail, as to respect my daughter, but there are definant signs that go along with a hormone imbalance. Next, she agrees with the diagnoses of Cushing's, although this has yet to be officially determined, she has a tenative diagnoses. Another thing... Bailey has experienced significant weight gain.....It is yet to be determined, if this is because of Cushing's or because of the hormone imbalance.

We left feeling really good. The dr. said she would call us back with names and numbers of all the drs we needed to be in contact with, and I was shocked when she actually called lastnight, ready to give me this list.

Another call back this morning and I was spinning with all this information that was being dropped in my lap. A few deep breaths and some notebook paper to organize my thoughts, and I had scheduled the Neurologist, Neurosurgeon and Endocrinologist, all for next week. The NF clinic evern called me, and we will be visiting them in September, after Bailey has healed up some from the surgery.

So after the appnts were set up, I got another call telling me that Bailey's insurance was not "active" yet. So all the appnts that were scheduled would have to be "out of pocket". NOT GOOD NEWS. :(

I spent another few hours, digging and calling so many people, trying to find out how we could make the insurance kick in, by the time we had to go to our appnts. I was tense and frustrated because I was getting no where!

One last call to make, I kept my tone sweet, but inside I was ready to break down. The lady on the other end was patiently listening to everything I had to say, even breaking in with sighs of sympathy.

She told me the same thing the others told me, except that she would make sure to look into it, and call me back........The call came just before closing for them, and she said Bailey should have her medical by tomorrow, and that SHE would call as soon as it was active.

A very up and down day today, that ended with a high!

Next week will prove to be one of our busiest weeks medically, that we have ever had. I am so happy to be on this road-though. Bailey is just going with the flow, and pretty mellow about things. I know she thinks about her brain tumor...and even gets scared about the surgery.....but she is so brave, and knows all that is involved with this.

Thank you all for the prayers and well wishes---it really means a lot to us, to have people thinking of Bailey....we are truly lucky to have so many loving and caring friends.

HUGS

Neurofibrobromatosis Awareness Bracelets

I was surpirsed by FedEx today...My bracelets showed up early! I'm excited...they look pretty good! After my issues with this company, I was delighted when they offered to replace the WHOLE batch....and toss in a few kid sized bracelets.

My intentions with the printed bracelets was to get the message to "pop". The engraved ones were great, but I was afraid the message didn't show up enough.

Sadly, the printed ones faded within days, and I was left with many unhappy folks. I apologize for this, and this is why I am offering to replace any of the printed bracelets upon request.

The "new" bracelets have a slightly different look to them, but I really like them!

If you would like to order NF Bracelets, there is a link to the right (please be sure to pay attention if you are ordering internationally.

If you ordered the printed bracelets and you would like a replacement bracelet, please email me directly at kristi.hopkins@gmail.com

I am grateful to 24wristbands for going the extra mile and making a very happy customer.

We now have KIDS SIZED BANDS (limited number) so when ordering, please leave a note through PAY PAL, specifying the size of bracelets you would like!

Thank you for supporting Neurofibromatosis Awareness!!

THRIVE ON!

Anxiety and Depression

I rarely blog about anxiety and depression, not because I don't experience it, (because I do) but because it can be really hard to talk about.

Growing up, I knew my mother was depressed. She'd even tell me...."Leave me alone, I'm depressed!" I knew when to walk the other direction and when it was "safe" to be close. (which was a rare thing)

My mother does not acknowledge her Neurofibromatosis, nor did she ever have me tested, even though I had all the ear markers for the diagnoses. It stresses her out to talk about it, so she avoids it.

I learned from both my parents, to avoid talking about what is bothering me to the point of shutting pretty much everyone out. I build a wall of protection around me, so that I won't have to deal with what bothers me, while inside, I am screaming for help.

Depression can be a scary thing, if not acknowledged and treated properly. I've gone years and years denying the fact thatI had issues with this. Claiming that I was the 'tough one' and could handle anything. Boy was I wrong.

After my diagnoses with 'NF', it was like someone opened the flood gates, and I had no other choice, but to face all the pain head on. However even though I kind of knew what to expect, I could never prepare myself, for all that NF was going to throw at me.

There was so much more that NF brought with it, that I now had to deal with. I wasn't ready for that. I wanted to crawl back into my shell and hide....afterall, my mom was doing and she seemed to be getting by okay. (yeah right)

Neurofibromatosis and depression, go hand in hand. There is countless literature backing up that those with Neurological disorders, also suffer from bouts of depression....But there is NOT much information on treatment for it.

MY mother is now in her 60's. Still depressed. Still angry. Told things like "You need a hobby, to help with your depression." Some treatement, eh? May work for some, but for those who are truly suffering from deep anxiety / depression, this won't even begin to touch the problem.

So how does it work? How does one overcome this? For ME...I have stopped justifying my depression as a natural side effect of NF , and chosen ways to THRIVE instead. Thriving doesn't mean ignoring the problem, but it DOES mean focusing not on the problem, but on the solution.

NF creates problems of all sorts. Heck, LIFE creates problems of all sorts, including depression of varying levels. What are YOU focusing on today?

CHOOSE TO HIDE....or CHOOSE TO THRIVE.

Hmmm I wonder which one I'm choosing today?

What's Up Wednesday

Today we meet with part of the team that will be involved in Bailey's surgery. I was impressed because the insurance has yet to kick in, but the doctors wanted to meet with us anyway...just to get things rolling.

I have the records, and copy of the MRI, so the Dr, can understand what is going on with Bailey.

I will take just Bailey .... It's important that we have this time alone.....We can talk to the Drs, without kids running the walls. :)

I am wondering about my own MRI, that was done just before our move. My Neuro in Spokane is just horrible and I am glad to be done with her. She sits in her million dollar office building and has no clue about Neurofibromatosis and how is affects people.

I am tired of being treated like my pain is not real. My head and brain issues have really bothered me over the last 2 yrs....and this medication does not work. Is it too much to ask, to just have a doctor make me feel better? Isn't it their job?

Acceptance

I haven't been blogging the way I used to. I know this, and think about it all the time. I think "When things slow down, I will put up a post." HA! In a house with six kids, things NEVER slow down!

This move to Denver has been awesome so far. We attended a great church, that felt "right". I always worry when I meet new people....I wonder, "Will they take one look at me and shy away?" "Will my appearance affect my friendships?"

My security level, with my appearance is often times at a low. The tumors growing on my body and face make me feel horribly self conscience. So I try to compensate, this by gravitating to children. At least THEY aren't as judgmental.

My friendships with people have not been the best....I have lots of friends on-line, but when it comes to face to face friendships, I'm not sure what happens. I try so hard to keep a healthy relationship going, but it always seems to crumble, leaving me wondering, if I unintentionally push people away.

But last night, while at a 4th BBQ, no one there judged me, or really even stared at me. They accepted me...for me.

Some at that party are my friends on Facebook and read my blog, so they know some of the issues our family is facing, so maybe it was easier for them to look past what is so obvious to me.

For the first time, in a long time....I felt comfortable having Neurofibromatosis. It was almost as if, it didn't matter.

I feel okay, explaining NF to those who don't understand it. I am okay with my diagnoses, and will fight hard to help my children feel okay with it too.

People with NF just want acceptance and understanding...but sometimes we have to fight to get it. If you give up the fight, you will only succumb to this disorder and it will drag you down.

For me and my family, the ONLY option is to THRIVE.

A BIG Update!

Well.....We are here in Colorado! YAY! This move has been so emotionally exhausting. I'm am so grateful to be here...and that we can finally start to get on our feet.

The drive from Spokane to Denver was sooo not fun, but there were no real issues and we arrived safely.

THANKS SO MUCH TO EVERYONE WHO HELPED WITH OUR MOVE!!! XXX

Now for the Updates!! We got some news, just before we started packing the truck, that Bailey had been denied benefits for medical coverage for a MUCH needed surgery. Her brain tumor has grown since March and we have been fighting with the state and doctors, to try and get this surgery covered.

After the denial, I have been extremely stressed, wondering how on earth this surgery was going to happen for Bailey....The surgery would happen, regardless of the financial impact, but it was seriously stressing me out.

This week, I got a call from a lady, who had been working Bailey's disability case. The words out of her mouth, just about sent me to the floor. "We reversed the decision On Bailey's case". Unsure of what this actually meant, I questioned her.....It turns out the state approved Bailey for disability and her surgery will be covered!

The impact of all of this, has truly taken a toll on all of us, including Bailey, who reads my blog and knows that this situation was truly stressful.

After this phone call, we called Bailey into the room and told her about this news.....She was just as happy as we were. :)

Now for the doctors and referrals .... and getting everything set up for this surgery. (that's the easy part)