Thriving Thursday

Rachel is my 7 yr old fiesty ball of emotion. She was diagnosed with Neurofibromatosis type 1, about 6 months after birth. I recognized it, before any of the doctors...and since I grew up knowing about NF, there was no question that she would my 3rd child to be diagnosed.

It wasn't a huge or crushing blow when the doctors said to me that they thought she had NF, I knew basically what to expect, and I was ready for whatever came our way.

The thing that baffled me was that, not a single doctor looked to me, for the possible reason 3 of my children had NF. Being truly in denial about my own issues, I was able to "fool" a lot of people.

I knew about my NF....but I wasn't keyed into the whole complicated mess and problems that we would soon be faced with.

The reason for this blog is to yet again state that I am no different than anyone else. I have wants/desires just as much as the next person. My children are my entire life....I live and breathe because THEY live and breathe.

Those who question my choices in having children have every right to question me. If fact, bring it on! But to publicly bash and humiliate me for my choice is where I draw the line!

MY SIX children are living HAPPY and FULLFILLED lives....and anyone who comes into my home will see that. My choice in having a large family was the choice OUR family made, and to try to bring me down and feel like crap for it, is something I will not put up with.

Each one of my children is dealing with some kind of issue...shall I not have children, because of the possibility of something going wrong?

If your choice is to not have children, I respect and appreciate your decision--I please ask that respect and appreciate mine.


Meet my children:


ALL of these kids were meant to be! Part of life, is sometimes fighting like hell in what you believe in. I believe in LIVING---I believe in THRIVING, anyone who knocks me for that, is in for the fight of their life!

What's Up Wednesday?

We were prepared for this doctors visit! We knew what to ask, and how to ask it. We were NOT leaving without knowing exactly where we stood in regards to this darn tumor!

A full hearing test was done, and the results were somewhat confusing. A definite change from last time, but still within "normal".

We talked about the ringing in the ears, change in balance and the headaches that Bailey has been experiencing. Dr. Giddings told us that THESE symptoms could be caused by the tumor, and examined her.

The tube he put in 6 months ago still looked good...and he was very impressed with the hearing test...saying that, with THIS kind of tumor, typically patients have pronounced hearing loss.

He did call the tumor a Meningioma, but said it could also be a Acoustic Neuroma....I wasn't impressed when he was fighting me about Bailey's NF1 diagnoses. He actually said Bailey had NF2, not NF1. I asked him how likely it would be, seeing that I had NF1. He had no answers.

He's a great doctor, and is being very thorough with the care and upcoming surgery plans....It's just this damn NF has to be so complicated, that even the "best" doctors have a hard time keeping up with all of the twists and turns of it.

He did agree that surgical removal was the best and basically ONLY option for Bailey. What complicates matters is this move to Denver. When I told the DR about this...he hesitated making an actual "date" for surgery.

First we need another MRI. This time they will focus on the tumor itself...then they will scan Bailey's spine. The Dr is worried about this tumor because in some cases, it can actually wrap itself around the auditory nerves.....If this is the case, surgery will still happen, except Bailey would possibly come out deaf in her right ear.

So, we will get this scan, and see the Dr back in May. From there we will make a plan. I worry though....Denver surgery would complicate insurance coverage.

One step at a time. Whew!

Thankful Tuesday

Yesterday we got something pretty amazing in the mail....and a wish was granted! Bailey held the big box in her hands and was sooo excited to open it!

Bailey ripped open the box saying "OMGOSH OMGOSH!" I had my handy dandy camera ready and captured a priceless moment!

When Bailey figured out what it was, she jumped for excitement! "A laptop....A laptop!!"

Our family would like to express our deepest and most heartfelt THANK YOU, to everyone who gave to Bailey!

BIG HUGS!!!

Caren and Barbara.....Special big HUGS to you both!!

Blahhh Monday

I'm mentally and physically exhausted. I'm scared about the upcoming Neurosurgeon appnt. I miss holding someone at night. (kids are great, but..well...)

Mondays stink.

We had a good weekend though....Cleaned house and got some things in boxes--preparing for our move. Bailey and I also worked on her science project. She was great -- Looking things up and busily writing things down...the project isn't due till May 6th, so I'm so glad we are ahead of the game!

I'm not feeling very 'Motivational' today....woke up not feeling good. So this morning is just an update :)

Bailey is doing MUCH better than I, in regards to her upcoming appnt. She says "Let's get this tumor out of my head...so I can move on with my life!" I know exactly how she feels. So much of our life, is spent waiting on other people to give us the answer--so that we CAN move on. (at least in MY life)

I hate waiting--it drives me crazy! But I know that this is a necessary wait, in order to get the BEST plan in place for Bailey.

She's worried about her hair, and camp and moving---Boy I wonder where she gets that worry from? Hmmm

Lastnight, I just held her for the longest time.....we talked about her hair, and camp and moving---I told her that I am worried about those things too....But---"Your hair will grow back, camp will happen...and our move will be great! --remember Bailey...u get your own room!!"

Helping her focus on the good, helps ME focus on the good.

Riley and Braden are seeing a urologist. Actually Riley has been seeing this DR since she was 5. Braden just began seeing her. My Riley has had chronic UTI's since the age of 4. We've had test after test done, and no one can explain why. So now she is on antibiotics everyday, for who knows how long...and is going weekly to exercise her bladder muscles.

We have yet to figure out Braden's issues. Dr put him on Ditropan, for a quick fix....but tests definitely shows a very spasmatic bladder....but the medication for that, made bedwetting WAY worse! Round and Round we go-

Rachel is doing well.....Except for her wild tantrums. They come out of no where, and nothing can calm her down. I often wonder if she is dealing with pain--and that's the only way she can get it out. Drs have no clue. I sometimes feel like I am walking in knowing loads more than they do.

They just use better words to sound smarter...and they have their handy dandy prescription pad, to give meds that only work to cover up a problem. Grrrrrr

Brooklyn gets to see an allergist -- she breaks out in hives all the time--so we are going to see if this is actually an allergic reaction to something.

Riker is great....besides fighting with his brother and sisters, he really is doing quite well. School is winding down and he is sooo excited for Kindergarten!

Well that's it for now....I'm taking a tylenol and going to rest.

My Dandelion Whine

My son usually comes home from school with a pocketful of "something" as a gift for me. He runs off the bus, greeting me with a smile and a hug and whips out whatever it is. I look forward to this time everyday--He's so happy and the stresses of my day melt away as soon as I see his face.

My "pocket gifts" have ranged from a half eaten pieces of pizza to rocks from his playground (that he "sneaked" just for me) to more useful things like marbles or play dough.

Today he runs off the bus excited and holding his pocket...."Hmmm What do you have Riker?!" I asked him. "It's a surprise mommy!" He runs of to the kitchen and gets to work.

A few minutes later, he calls he to come see. "Look mommy, I brought you flowers, do you like them?" I see a cup full of the most gorgeous dandelions I have ever seen, and a note.

Riker was so proud of himself, as he stood next to the cup filled with lawn weeds. He had no idea that most people look at these plants as something to get rid of. All he saw was a flower...and all he wanted to do was make his mommy happy. (And he did that)

I was talking to a friend of mine about my sons funny gifts and about the dandelions....and I was thinking about life with Neurofibromatosis. (I know I know...but stay with me here)

People look at us, as different....as something not within the "normals" of BEAUTIFUL. Or...they just don't look at us at all. But who says that a dandelion is ugly and unwanted? Who says that a tulip or rose is more lovely?

It just got me thinking about perception. I see my dandelions and smile, because they remind me of my children. They are beautiful to me, because of the wonderful meaning behind them. Why can't everyone take the time to see US the same way?

That's my Dandelion "Whine" today....

Lean On Me

I wanted to take today and express my heartfelt appreciation for those reaching out to Bailey. When the word got out that Bailey was wishing for her own computer...the overwhelming response blew me away!

I am consumed with emotions, but I just wanted to tell everyone THANK YOU! From the bottom of my heart! This is going to make Bailey's YEAR!

To those sending cards and thoughtful messages, I love you guys! YOU are the whole reason this family is THRIVING with NF. Without my friends....there wouldn't be much point in all of this.

God Bless You ALL!

XOXOX

Tumor Talk

We finally got a call back from Bailey's Neurosurgeon-Dr. Gruber regarding her tumor. The news was NOT what we had hoped for.

The tumor will NOT be treated with lazor, or the new / cool gama knife. Instead, a plan for open surgery is being put into place.

Confident that Bailey would take THIS news, as well as all the other things she has had to deal with, also took a turn for the worse. She broke down and began to cry.....Sometimes THIS is when a person shows just how strong they really are.

Being able to let down and FEEL the emotions of something like this is VERY important! It makes you real...and being "real" helps you grow.

I held her so tightly against me and told her that no matter what the drs decided to do....I will be there. She will not be alone, ever.

She's scared....and rightly so. Anytime one has surgery, it's scary.

So we will meet with another Dr, and the team will start the planning for surgery. Looks like we have a long road ahead of us....Good thing we have God on our side.

True Life MTV, Neurofibromatosis

I have to admit, I was a little worried about how Mtv would portray Neurofibromatosis. Would they make us out to be freaks? Would they give misinformation about the disorder? I have seen some of the shows on Mtv....and was thinking the show could go horribly wrong.

But I was impressed. I watched the show with most of my kids. Rachel was funny. When someone on the show said "I have NF", Rachel said, "Wow...I have that too!" Bailey and Riley were very interested in the show too.

During the commercials, my children asked questions...."Why can't they remove all of the tumors?" "Why will the tumors grow back?" and Bailey says, "This makes me feel sad. But these people are still smiling and still pushing through....So will I!" (Another proud mommy moment)

I enjoyed the bits with the Drs...and how the show portrayed the true emotional pain that NF causes. I was so happy with Bekha and seeing the before and afters of the surgery that removed a tumor from her spine!

All in All I was impressed.....

True Life - MTV Shows

Motivational Monday

As we sat in the waiting room, I thumbed through a magazine, peeking every now and then to my kids who were playing quite nicely, in the nook, across from me.

I was nervous. I'm not usually like this. I closed my eyes and said a silent prayer, that the news we would get today would be good news.

 

The nurse called Bailey's name and we all headed back into the exam room. Brooklyn and Riker slid their hands along the wall and jumped to avoid the cracks in the floor.

 

"You okay Mom?" Bailey asks me. "I'm just thinking about you, sweetie." She puts her arm around my shoulders and says, "Well, I hope you're not worried, I mean what's to worry about, Mom?"

 

Bailey amazes me everyday that I spend with her. She struggles in school, and has very few friends, but always has this way of comforting me...and looking at the bright side of most everything. "I know everything is going to be okay, no matter what!" she continued to reassure me.

 

Wasn't this MY job? Wasn't I supposed to be comforting her?

 

She walked boldly and confidently into the room, where she was asked to sit up on the table. Brooklyn and Riker headed for the chairs at the window sill. I stood and answered some questions, to make sure we got a full history in Bailey's chart.

 

"How was the pregnancy?" "When was Bailey diagnosed with NF?" "What are the symptoms that Bailey is experiencing?" Answering all these questions made me feel uncomfortable, but I knew it was important.

 

Bailey was not officially diagnosed with NF until she was 14 yrs old....and even then- we were told to "watch and wait", since there was no cure for this dreadful disorder. For 14 yrs, we had no real issues, and required no special treatment for her NF, except in school.

 

I watched as the nurse performed a full Neurological exam on Bailey...and she did well. Blood pressure and pulse were taken, as well as a look into her eyes. The nurse noted the exotropia and asked if we knew about it. (We do and are seeing an Ophthalmologist)

 

The doctor came in and sat down next to me. We talked about the tumor that was found in Bailey's brain, and he assured me that this was a slow growing, BENIGN tumor, but I still began to feel this overwhelming sense of guilt.

 

Bailey hopped down from the table and slid next to chair next to me. She saw the worry in my eyes, she understood that even though this was a benign tumor, it was still very serious. She held my hand and whispered...."I love you mommy, I'm going to be okay!"

 

The doctor smiled at this and raised his eyebrows, as if to say, "WOW, I'm impressed!" I smiled too.

 

The doctor went on to tell us about the placement of the tumor and all the possible effects, that HAVE already occurred and what COULD happen. "Hearing could be impaired and since this tumor is right on a nerve that control facial muscles...her face could become deformed." Bailey squeezed my hand tight.

 

We talked about possible treatments 1) Watch and Wait 2) Open Surgery to remove the tumor  or 3) Lazer treatment

 

We were not to decide then, and were told that a team of doctors was being assembled and I would be contacted about what THEY felt was the best approach. "I HATE NEUROFIBROMATOSIS!" I thought to myself. I clenched my teeth and fisted my hands.

 

The doctor looked at me and put his hands on my shoulder...."We have time, this is not imminent." But all I wanted to do, was to do something RIGHT NOW!

 

We were able to get a copy of Bailey's MRI..which Bailey thought was "Sooo Cool!" She immediately pointed at the tumor and asked, "Is that it?" "Yes" I replied. She stuck her tongue at the photograph and said, "We're gonna get you, sucka!" I just laughed and stuck my tongue out at the tumor too.

 

As we left the office, Bailey looks over at me and says, "I can't wait to get home and blog about this, because I'm not afraid and I want to let everyone know that I'm not afraid!" I stopped her and hugged her. "You are sooo awesome Bailey.....I love you!"

 

Over the weekend I saw Bailey looking rather distracted and lost in thought. "What are you thinking about honey?" I asked her. "Oh just about my tumor and the hospital." she replied. I went over to her and sat down next to her....asking her is she had any questions and told her to try not to worry about this. She looks up at me and bluntly says, "I didn't say I was worried...I'm just thinking about it. Will I get to stay in a hospital? Will I get to stay overnight? I'm actually excited to do something about this, what are we waiting for!?"

 

Yet again, I am blown over by this young lady's outlook on her NF. She really isn't worried or stressed about this and I am so grateful for that. She makes me so proud, and I learn from her positiveness everyday.

 

I love you Bailey Boo. You are going to inspire a nation! You can follow and check up on Bailey, by following her own blog.

www.achildsviewintonf.blogspot.com/

Neurologist and French Fries

Ahhh the Neurologist. There's nothing more intimidating, then walking into the doctors office, to receive news about something you know not much can be done.

We know the routine with this...."Let's watch and wait." One of these days, I just wish we could walk into the doctor and hear, "I know exactly how to cure you."

I may never hear this in my lifetime, but I am wishing for my children to be able to experience this.

Bailey is in good spirits about her appnt with the Neurologist this afternoon...I'm not sure if it's because she got a day off from school and promised french fries afterwards, or if she is truly just not worried about what we will hear today. Either way, I'm so proud of the way she is accepting and Thriving with Neurofibromatosis.

Chk out her blog http://www.achildsviewintonf.blogspot.com/

Determination

Motivational Monday

"Every accomplishment starts with the decision to try"

What's the first thing you think of when you hear the word determination? My first thoughts are of my children, who without hesitation, go after what they want, and usually don't stop until they get it. I love them for this...It has taught me to not be afraid to go after what I want.

These last few years, I have gotten up close and personal, with Neurofibromatosis. I have learned so much about this disorder, more than I ever wanted to....and even though it scares me, knowing that this beast is a part of our life, I have this determination, to never allow it to scare my children.

Three of my children are affected by NF. Knowing this crushes me to the point that I feel endless guilt, for adding this, to an already complicated life. But I know, that whatever the NF brings with it, cannot and will not take away my drive, to give my children the best life that I know how to give them.

They are happy and generally healthy kids...who have a spirit inside of them, that just makes me so proud. I will love them to the ends of the Earth and back again.

I am friends with a middle aged mother who has 5 kids. This woman is healthy, and has no genetic diseases or cancers in her family history....But she went on to have 3 special needs children. 1 with severe Autism, 1 who is partially blind and deaf and 1 who is in remission from Leukemia.

A perfectly healthy woman...and 3 special needs children. It just blows my mind. NOTHING is guaranteed.... absolutely NOTHING.

This woman has the weight of the world on her shoulders, but still presses on, determined to persevere....and I think she is doing an awesome job. *You know who you are*

I am so proud of the friends I have...who are choosing to never give up. I know who hard it is to deal with the unknown path of a cruel genetic disorder....I also know how good it feels to stand up to it.

Whatever YOUR fight is...keep going....Keep choosing to beat it.

Thriving Thursday

Well, I think we are finally back to normal, after our wonderful vacation to Florida. The first few days were tough...the kids were waking up at 5 am and all ready for the day! Yikes!

Spring Break is this week, and the kids are enjoying recovering and having no school to worry about.

Coming back to "reality" is hard. I just wanted to stay at GKTW forever. It was such a peaceful place. But maybe that's why it's so special, you catch a glimpse of magic, and learn to appreciate life in a whole different way.

I told Bailey about her MRI results, soon after we arrived home from vacation. We sat her down and explained that the MRI picked up a growth, and we will be going to see more doctors, that can help us understand what will be needing to do.

She stood there, and I was half hoping she would break down, so that I could just hold her in my arms, and let her know she was going to be alright, but she didn't....She just shrugged her shoulders and said, "Okay, well...I'm okay, and I know I will be okay."

Later that night, I went into her room to say goodnight....and asked her if she had any questions about what had talked about earlier....She smiled at me and said, "This is just something to overcome and beat. " I sat there, looking at this young lady, so proud and filled with so much love.

"You'll be there with me every step of the way, Mom, so I know I will be okay!" We hugged and prayed and I rubbed her head....I told Bailey how happy she makes me, and how proud I am of her....and she says, "Well I'm proud of you too Mom!"

The appnt for the Neurologist got moved to Friday April 9th...and I will update with what we find out.

My children may have inherited NF from me....but they also got a fighting spirit to be able to overcome anything that life puts in front of them. I am truly blessed and honored to be a mother to them.

THRIVE ON!

~K