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....