Thursday, December 29, 2011

ADHD Relief!

For YEARS, I was that mom who said I would never medicate my child, unless it was for something I had no control over medically. I kept repeating my belief to myself over and over...While my daughter's pediatrician listed of possible medications to treat her ADHD.

“NO!” I thought...”I'm not going to do it!”

We have had a lot of experience with ADHD medications, but not a lot of luck when dealing with my oldest son...So I was very hesitant to begin the process all over again.

But as I sat in the exam room, with my bouncing-around-the-room 9 year old, watching her hang upside down from the swivel chair...I thought, “What the heck?” and decided to accept the prescription for Ritalin.

Rachel has a lot more going on than just ADHD. She also has Neurofibromatosis and Sensory Integration Disorder. Both of which are highly complicated and difficult to manage.

I filled the new prescription and planned on starting Rachel the next morning. She and I talked about how to swallow the small pills and even practiced with tic tacs....She was just as excited as I was--

But that didn't last long-

At first I was thinking it was Rachel's stubbornness not allowing her to swallow the pills...after day 1, 2 and then 3, I realized that swallowing her pill, was not going to happen.

A call to Rachel's Doctor and a quick change to capsules (so I could sprinkle the pills into applesauce or pudding) was surely going to be the answer. But that didn't work either....Rachel Hyper sensitivity to taste and texture had her gagging and throwing up her pills.

It even got to the point where Rachel would stop eating her food, because she was afraid I had “hidden” her pill. I was ready to give up...And Rachel was too!

Then our doctor called with another possible solution. A patch. Worn for 8-9 hours a day and removed at night—No pills, No Gagging!

I was in! Rachel was excited too! I filled the prescription right away, and brought home a box of patches, and showed Rachel where it would go and how it felt.

We have been on the patch for a couple weeks now, and while I do not notice a huge difference, there are minor changes that we see.

Sometimes it takes some “gagging”, to get the right answers, or the right kind of care. I know for me and my family, we have done A LOT of trial and error when it comes to our health. We have even “fired” some of the doctors we have gone to, who just don't understand the needs we have.

The point is...To keep going until you get the answers you are comfortable with...To be heard, to be understood...And to Never Give Up!

Thrive On!

Rachel showing off the patch on her hip :)

Monday, December 26, 2011

Christmas 2011

Christmas has come and gone.  It was such a great Christmas...Even with a few of us down with the stomach flu. :(  We had an amazing early Christmas gift, given to us by way of the results from Bailey's MRI.
Dr. Rush passed us in the halls, before our appointment with her...She gave us a quick "thumbs up" and told us that Bailey's MRI looked "good".

Good...Means stable.  Which is not just GOOD, it's fantastic!  
This was the best Christmas gift I could ask for!

The anticipation for Christmas to come...had my kids so excited...But the stomach flu halted that excitement for a few of us.  I was just waiting for it to hit EVERYONE in the family...But thankfully it didn't.

The holiday got off to a GREAT start with Christmas Eve dinner...That was delivered by volunteers from a wonderful organization called 'There with Care'.  TURKEY, stuffing, sweet potatos, green bean casserole, pies...the works!

It was enjoyed by the entire family...Including a family member who flew in from California to visit us!

We enjoyed Christmas movies and our traditional read of 'Twas the Night Before Christmas.  The kids set out cookies and egg nog for Santa and were asleep by 10pm!

Just before they went to bed, the kids got to open up a gift each...then a family gift.

 "POPCORN OIL?  Are you Serious MOM?"


Ohhhh....Now we understand!  A Popcorn Popper!  AWESOME!!!

 Christmas morning--the kids woke up to a living room with 4 new bikes!  Braden, Riley, Rachel and Brook all got bikes!  Thanks to 'There with Care' for full filling their wish!  They were soooo excited and wanted to go right outside to start riding them!

Monday, December 19, 2011

It's Not Cancer, So Why Chemo?

"Does Bailey have Cancer?"

The simple answer to that question is No.  But if you want to pull up a chair, I can explain to you what Neurofibromatosis is, and how it has affected my 15 (gasp!!...ALMOST 16 yr old daughter)

When I heard the word "chemotherapy", my heart sank.  I never thought it would happen to us!  Not MY daughter!  But there it was.  
Surgery was too risky.  Radiation not an option.

If we chose NOT to do chemotherapy, the tumor, that lays growing, deep in my child's
 brain could take her life.

Time stood still, the day we were told about the year long treatment plan of chemotherapy.  

Anyone who has been in this situation knows exactly what I'm talking about.

I was confused and filled with questions.  Why chemo if this isn't cancer?  The answer to that was that chemo would hopefully stop the abnormal cells from growing...those abnormal cells being the NF related tumor.

It didn't feel real.

We are now 9 months into treatment...With no real news to report except that we are stable. (for now)

Our 3rd month into chemo, we got news that Bailey's tumor had grown...Devastating news, and what was worse was hearing that we needed to switch to a stronger type of chemo....Stronger chemo meant more side affects (Nausea, Hair loss, Bone pain, Low blood counts)
Chemo treatment is a bit like finding the right pair of shoes...Sometimes, it takes "shopping around", to find the right fit.
But I find myself holding my breath until the next MRI...What will the next results show?  Where will we go? What will we do?

Things with Neurofibromatosis can change in a heartbeat.  One moment everything is stable...The next, we are rushing to find a different treatment plan.

It's a roller coaster ride, of endless ups and downs.

For now...The chemotherapy has saved my daughters life.  

 While she doesn't have cancer...
She has a tumor that went from "nothing" "something" in just a few months.

And I while may hold my breath until the next MRI...I know that I am not the one in control of any of this.  My faith and attitude are the only things that I CAN control.  All I can do is trust and believe that whatever the results are...We can get through and deal with them.


Wednesday, December 14, 2011

Santa Claus!

We got a surprise in the mail today!

Letters from Santa Clause!

A special delivery from the North Pole!  
 Santa wrote to Rachel to let her know how proud he is of her, that she has been such a good girl!  He wrote about how the Disney Princesses were proud of her too...for trying so hard in school!

Santa wrote to Riker to let him know what a great big brother he has been to Brooklyn!  He says to be sure he goes to bed early on Christmas Eve so that he can come down the chimney and leave presents!

Santa told Brooklyn that he has been watching her all year long...And was happy that she has been such a good girl!  He told her to tell Riker to get to bed early...and to not peek on the presents!


The kids were so excited to read their personalized letters!!  They couldn't believe that Santa took time out of his busy schedule just to write to them!

Thank You 'There with Care' for making this such a special Christmas!

Monday, December 12, 2011

Reason for the Season?

How would you respond if everything you owned of earthly value were taken away from you?  If you had nothing left but your relationship with God?  Would you give in to the worries of this world?  Or find your strength in Jesus Christ alone?

I know that I talk A LOT about Neurofibromatosis....This IS a blog about NF after all.  But there is much more to me than just NF related stuff....So much more to me than JUST medical stuff...Hard to believe, I know!

I am a lover of Jesus Christ.  I'm not ashamed to admit it...In fact I take great pride in proclaiming this.  But lately - especially over the past year, I have gained a new perspective on my relationship with the Lord.

The reality that things and people that I love and care about could be taken from me at any moment gave me a new realization that I needed to change my ways.

At church the past 2 weeks, I have been teaching the Sunday school kids about Job. (No, not J-O-B...The man named Job, who was a lover and believer in Jesus, and who never wavered in his beliefs, even when everything he cared about was taken from him)

It was interesting, when I asked the children in my class, what as on their Christmas 'wish list'.  The kids had no trouble listing off some really cool things.  "I want a remote control race car!"  "I want a baby doll that can eat real food!"  "I want transformers!"

But when I asked them what they would do if they got everything they wanted, then the next day, it was all taken away...They sat  in silence.

One boy finally said he would cry, another child said they would be mad, then there was this one...he said that he would ask God why He took those things away...

Job knew exactly where he stood with God, which I find amazing.  The story of true faithfulness brings me to  such great humbleness that I find myself feeling ashamed when I look around my house.

The biggest lesson I get from the story of Job, is how selfish I can be...I allow how and what the world thinks of me affect me in real ways.  I get so worried about not having enough, being enough...and that selfishness prevents God from blessing me more.  

The thing I have to remember is that everything is GOD's....Not MINE.  And everything that is in my life, that isn't OF GOD, is worthless.

This Season, and Forever, I celebrate the true reason for rejoicing!

Thrive On!

Friday, December 9, 2011

Christmas is Coming!

This is about the time I start to get really excited for Christmas!  
It feels like I started seeing Christmas decorations in the store before Halloween!  I mean...I love Christmas...But it seems like it has become quite the holiday hog!

We plan on truly making Christmas be its own holiday....Explaining to our children what Christmas is all about...How how to honor THIS season by itself.

We got some snow...Which of course makes this time of year more "Christmassy"....There is nothing I love more, than watching the snow fall outside...While I am warm and snuggly inside, with a cup of hot cocoa!  

If I HAVE to go out in the snow....That's okay too.  
The kids love to play in the it...They typically last about 10 minutes... :)

The tree has been up since Thanksgiving...then slowly decorated with ornaments that we have collected over the years....It's so much fun decorating the tree because each of the kids has their own ornaments, each with its own memory.

Our tree leans to one side....Is unevenly decorated...The lights aren't perfect...(Not to mention, I got the tree for FREE)....It's OUR tree....Its filled with memories from MY family...And that's what makes it so special!

I hope for all of you...A very special and Merry Christmas!

Thrive On!

Wednesday, December 7, 2011


After years of wondering and asking questions about my 4 year olds skin...We were FINALLY referred to a dermatologist!  I was worried about these white patches on her skin, but kept being told that they were scar tissue, from a hive outbreak a few years previous.

But they didn't look like scar tissue...Didn't feel like scar tissue.

When the appointment day finally came, I found myself very nervous.  From all that I have read about Neurofibromatosis, I shouldn't be worried about these white patches having anything to do with that...And since Brooklyn had been previously cleared of NF, I shouldn't be concerning myself.

But as we were waiting for the doctor to come in and examine my daughter, who was dancing around the room in just underwear, happy as could be....My mind went there.

"What if by SOME chance, this happens to be some hidden symptom of NF?"  I couldn't help myself.  NF has been such a huge part of my life, that I wouldn't be surprised if this crazy disorder smacked me in the face with a brand new symptom.

When the doctor came in, she asked why I was there, took a family history and asked about any known allergies.  We talked about NF and I was so happy that this doctor specializes in NF.

I lifted Brooklyn onto the exam table and showed the Dr. the white patches that had formed around my daughters thighs and legs.  The dr. paused and ran her hand along Brooklyn's legs...I asked the dreaded question..."Do you think this could be related to Neurofibromatosis?" 

Then braced myself for the answer.

Her response filled me with such relief.  

The doctor went on to diagnose Brooklyn with a very long named skin disorder..."Vitiligo" for short.  This a condition in which your skin loses melanin, the pigment that determines the color of your skin, hair and eyes. Vitiligo occurs when the cells that produce melanin die or no longer form melanin, causing slowly enlarging white patches of irregular shapes to appear on your skin.

It's not serious...but could spread during her lifetime.

Brooklyn was prescribed a few creams and  an allergy medicine to help with her itchiness.

I was relieved and thankful that we got this checked out...The worry about it being 'something else' was driving me crazy.  Isn't it crazy how we put ourselves through so much worry?  We avoid seeking out answers, because we are afraid of what could be?

The unknown is ALWAYS more scary then what really is.   Never postpone going to a doctor if you are concerned about something...The answers you get may not always be good news...But knowing is better than not knowing...And after you can take the steps to get yourself better.

Take control

Thrive On!

Friday, December 2, 2011

Make-A-Wish Christmas Shop!

Today was awesome!  Make-a-wish of Colorado had a wonderful event where all the kids who  were granted a wish were invited to the Colorado Children's Hospital to shop for their family members.

It was great seeing all of the smiles, most especially Bailey's!  She decorated her bag, then headed for the presents.  I waited outside, while she shopped very thoughtfully  for everyone in the family.

There is nothing like the smile on a child's face.  
Smiles change attitudes and automatically make you feel better.