Tuesday, November 11, 2014

Holiday Craziness!

I usually go missing in action this time of year.  The craziness seems to keep me running from one thing to the next...So today, I wanted to slow things down a little and catch up.

My Holiday CRAZINESS begins in September.  While school has already started, September is filled with Birthdays!  And the Birthdays don't stop, until after we ring in a new year.

September 18th...Both Brooklyn and Riley turned another year older.  I swear, when I look back at all the parties ...It just seems to have swept by and gone WAY too fast!

Then....I turned 40.  Yeah Yeah...I even dedicated a whole blog post to how I feel about that...But, it's not as hard as I thought it would be to be 40.  I kinda like it....Now, I can act mature and feel normal doing it....Or I can be silly and be one of THOSE moms...

Early October, Braden turned 17!   SEVENTEEN!!!  I can hardly believe it!  These kids are becoming grown ups, right before my eyes!  Having THREE teenagers in my house is a daily adventure....I am so proud of all of my kids!

THEN....we had Halloween....Which seems like was celebrated the ENTIRE month of October.  I love EVERYTHING about October...Especially raking and playing in the leaves....Which became tradition the very moment I became a mommy.

And now...We're into November...Thanksgiving and another Birthday....Then December...With ANOTHER Birthday and of course Christmas...

In the meantime...We had another STABLE MRI for Braden, which sets our mind at ease a little...And we can put our focus where it should be...

That's an update from my little corner of the world...I hope that my family and friends who read this blog learn to take the Holiday Craziness one day at a time...and enjoy those moments when you can relax and reflect on the blessings that surround you.

Thrive On!

Monday, November 3, 2014

Transitioning From Pediatric to Adult Care

Time truly does fly by!  I honestly have a hard time believing that I am a mother to someone who is getting ready to turn 19 years old!

Recently, I have been obsessed with going through old pictures...Baby pictures.  Toddler pictures.  And as I sift through the years of memories....Laughing...Crying....And feeling all these emotions of pride and overwhelming joy....I begin to wonder how ready is my "baby" to be a part of the REAL WORLD?

Can she advocate for herself....?  Set up appointments?  Follow through with doctors recommendations?  Know what questions to ask?  Will she be like me and bring a notebook, to write what was being talked about at appointments...?  Have I led a good enough example, for her to start taking over...?

Transitioning from the Children's Hospital...Where we have gotten OUTSTANDING care can be a little scary.  But hopefully OUR experience can put your mind at ease....And make the steps a little easier for you!

First, just because your child is 18....Does NOT mean they get the boot from the Children's Hospital or Pediatric Clinic that you have been using.  Typically, these services will see a child until they turn 21....Sometimes longer.

But there are cases, where it may be time to move on before the 21st Birthday...And that's what we are experiencing now, with Bailey.

With things being "stable" in regards to tumors and back issues, we as family feel, now is the time to set Bailey up with 'Adult Care'...Since these will be the services used for the rest of her life.

Typically, transitioning is pretty easy....You just get your CURRENT Pediatric provider to refer you to a Adult Provider, or 'Family' Provider....And that's that.  But....Sometimes, like with our situation, finding an Adult Provider who is familiar with the massive amount of complications, caused by a relatively unknown medical condition, has proven to be a little tricky.

So....This is where the 'dirty work' begins!

It's really not DIRTY work....It's more like accessing information...And asking LOTS of questions! Networking...Talking to people...And using resourcing like Facebook has been truly amazing for us!

Odds are...That there is a support group out there for whatever health concern your family is dealing with...and if you search hard enough....There is most likely a support group for the health concern...IN-YOU-AREA!  It may take some time....And you may have to reach out, beyond your comfort zone...But the information is there!  You just need to access it!

Meeting new doctors can be overwhelming...I have met a few doctors...Who seriously should NOT be doctors, based on their bedside manners..and lack of empathy...And even MORE doctors who I FELT like I WAS the ONE who should have the degree hanging on the wall!

It's kind of like trying on shoes...Or buying a new care.  Sometimes....You need to "try-on" a few doctors to see if they will work for you.  Test drive them...Seriously.  There is nothing wrong with moving on to the next doctor, if you fee uncomfortable -- In fact, in the end, it's all about YOU anyway...and you DON'T want to be stuck with a doctor that you don't feel completely comfortable with.

Start with your insurance ... They have agents working that are trained to help...It's really as simple as picking up the phone and asking a few questions.  This will at least give you a starting point.  

Then reach out to support groups on-line...Or maybe even start your own.

I know that in our case, Bailey will still need me to be there with her....Advocating for her (plus she doesn't drive)  But I am slowly allowing her to start making decisions on her own...She is "co-manager" and hopefully will someday be able to take over.

This transition won't happen overnight - So we are slowly, gradually beginning the process now, to help Bailey become more responsible for her healthcare needs. 

Things that are important to start teaching your teenager NOW
  • Have THEM ask the questions.  Prepare ahead of time some of the things that may come up...Then have your child take the wheel.....Help them (of course) if they need it...But learning how to interact with doctors is one of the most important skill to have.
Does your child understand their medical condition?  In our family, honesty has been very important.  Bailey was asked to step out of the room, when we got our brain tumor news....But we said "No" to that.  She has been included in ALL aspects of her health care...and she knows what is going on.
Knowing about the condition, is the only way for your child to start helping themselves with treatment.

A really good website to go to...To see if you and your child to ready to transition -> Is My Child Ready To Transition to Adult Care

Thursday, October 9, 2014

Teenage Life with Neurofibromatosis

Life is hard.  Being a teenager is awkward and filled with hormones and emotions that run wildly rampant...Often sending teens into feeling depressed, angry...even, in some cases suicidal.

When I was 14 years old, I attempted suicide.  I fumbled through my parents bathroom drawers and found a package of Nyquil Liquid Gels.  There were 6 pills left.  I was SURE this would do the job...So I desperately popped the pills out of the foil, into my hands and swallowed them all as I stared at my reflection in the mirror.  I didn't think.  I didn't care.  I was desperate.  And I just wanted my pain to stop!

"No wonder they call me names!"  "I don't blame them for hating me..."  "I hate you Kristi!"

My symptoms of Neurofibromatosis were so mild back then (relatively)....But enough that the other kids KNEW I was different.  I KNEW I was different....But since doctors told me and my parents that I DIDN'T have NF....No one knew WHY I wasn't fitting in...Or why I just couldn't be "normal"!

There were no answers back then as to why I couldn't keep up in school.  Why I wasn't understanding the material being taught....Or why my body, was "freckly" and "dirty looking".

Today...We are raising 6 children.  THREE of whom happen to be FULL-BLOWN teenagers!

Two of those teenagers also have Neurofibromatosis....And life is definitely different for them.

There are no set of rules for ANY teenager, let alone ones who face the challenges that come with having a complicated/progressive disorder like Neurofibromatosis-- But there are things that I have learned along the way, that have helped.

First, and most importantly....Let your teenager in on what is happening!  KNOWING what they have, whether it's Neurofibromatosis, or any number of life-long heath issues is the key in to helping OTHERS understand, and more likely to accept them, which will in turn, help your teen accept themselves.

It wasn't my parents fault that NF wasn't diagnosed earlier (I was 34 years old and pregnant with my 6th child, when I was 'officially' diagnosed)  Nor was it their fault that I was horribly bullied...But they did miss vital clues, that could have saved me from a lot of the physical and emotional pain I was experiencing...

When it comes to my children's health.  ALL OF THEM....Even my 7 year old, who has been diagnosed with VITILIGO -a skin condition in which there is a loss of brown color (pigment) from areas of skin, resulting in irregular white patches that feel like normal skin...KNOWS what is going on with their health.

While my now 18 year old daughter was diagnosed with a brain tumor, that required IMMEDIATE surgical action, to put in a port, for chemotherapy...There were no secrets, and no sugar coating things.  SHE KNEW every-single-action, we as parents were taking....and SHE had input, and opportunity to express how she felt about what was happening to her.

If only...I had felt safe enough to TALK to someone, when I was kicked...and spit on....When girls in my gym class poked and made fun of my birth marks, and "bumpy skin"....How different would my teachers have treated me, if they understood that I had a learning disorder...and wasn't just "LAZY and INATTENTIVE"....?

Pay attention to your teenager!  Stay involved with the school and your child's teachers!  ASK THEM QUESTIONS about how they are feeling.....

Growing and changing into young adults is difficult all by itself....But when you add all the things that come with having Neurofibromatosis (tumors, birth marks, freckling, deformities, amputations, learning challenges, emotional issues, social problems....Not to mention - a higher-than-normal amount of doctor visits....)  Things can get a little rough for your teen....And being able to be open and honest with them about what they are feeling is SO IMPORTANT....Remember- that it's not just YOU going through this...It's THEM too!

Let your teen FEEL what they FEEL.  Try not to make them feel like they should just deal with it ...without being able to get emotional.  Allow them get be Angry...Sad...Whatever....And give them ways to cope....I know there have been countless days, where my daughter Bailey has become very upset with having NF.  Life is "UNFAIR"...She HATES what her body is doing....And feels hopeless and confused....

VALIDATE YOUR CHILD!!!!  Let them know you are there for them!!  Those feelings are part of the coping process!

Joining a support group, FOR TEENS going through the same thing HELPS BIG TIME!  At first, my daughter was resistant to the idea of talking to "strangers" about what is happening...But - over time - this has been HUGE in helping her through some pretty tough stuff!

WWW.CTF.ORG has been AMAZING!  Bailey has gone to camp a few years in a row, and connected with kids her own age, that also have NF....Building those relationships has been a very important part in helping her know that she isn't the only one going through this.

Also...As a parent...YOU should have a way to process what is going on as well.  It's tough being a parent, watching your child go through a diagnosis -- It's confusing, heartbreaking and emotionally exhausting!  

(I know I have felt ALL of these feelings)


You, as a parent have a responsibility to guide and lead your child - and help them become the best they can be...But they can't do that, if YOU aren't the best YOU can be.

YOU...have to go through the process of accepting this, just like your child does....So learning ALL you can about whatever the diagnosis is...is extremely important!

While doing this, I know personally, that it can be overwhelming and scary...But - TRY - to keep things in perspective.  Not everything you learn about the diagnosis will necessarily happen to your child....GOOGLE is not the best way to learn...And always shows you the worst-case-scenarios of images and stories...So, getting your information from OTHER parents and families is the best way to learn...Not only ABOUT the condition...but also how to handle what is happening.

***Don't be afraid on 'what ifs'!  Ask questions!....And get involved! -  Find out if there are support groups...Or fundraising organizations for your particular diagnosis....Taking an ACTIVE ROLE will help not only YOU....It will also show your child that THEY TOO can not only accept what is happening....BUT they will also THRIVE!


Tuesday, October 7, 2014

Guest Post- Rosie Watts- Helping Paul

I love when I am contacted by people out in the community who are making a difference!  Today I am proud to share the story of a young man named Paul.

*From Rosie Watts- "Thank you so much for this opportunity Kristi. Here is the blog: I have also attached a video of Paul and some of the boys doing music at the new inclusive school :)"

Hello everyone,

I would like to thank Kristi for the fantastic opportunity to share Paul's story on her blog. I think the motivation Kristi has for helping people is fantastic, you really are very inspiring.

My name is Rosie Watts, and I have been working in Ghana with children with special needs during my summers from University. I worked for 6 weeks this year in Kumasi Children's Home, where I built a sensory room filled with specialized activities for the children with special needs. I have also been helping to renovate the school to make it inclusive for every child with special needs in the home.

One of my main current charitable projects in this home is helping a young boy, called Paul. He has a diagnosis of neurofibromatosis. Paul has been in the Children's Home for around 5 years, he was abandoned there when his face and head began to grow abnormally, mostly on his right side. Since then, his head and face have continued to grow abnormally however physically and cognitively, the rest of his development has occurred seemingly as normal. It is not known exactly how old Paul is now but the home suggest between 9 and 12 years of age. The excessive deformities of his face and head have seemed to develop gradually over time and over the past two to three years have begun to crowd and obstruct his vision to the extent that he is now operating as fully blind.

 An Image of Paul at school when I took him this summer. 

As soon as I met Paul in summer 2013, I fell in love with him and he was the individual who inspired to return to Ghana. He is the most amazing, positive young boy despite his condition. He loves cuddles and kisses and lots of attention, which the children in the home often do not get. Every morning when I arrived at the home he would come running up to calling my Ghanaian name ‘Ama, Ama’, we would greet with love and it would put a smile on both of our faces. Paul now attends school which he absolutely adores and he is really thriving in many ways.

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Mine and Paul's morning greetings. The smiles say more than words could ever say. 

When I was in Ghana this year I took Paul for various medical check-ups such as CT scan and am currently using my trusty team over in Ghana to continue this, I am in the process of arranging for Paul to get a biopsy to determine whether his condition is benign or malignant. I have now received the scan results back and have sent them to multiple neurosurgeons and professionals specializing in neurofibromatosis, as well as a range of support groups. I am in the search of information to increase my knowledge of the treatment that Paul needs and also for a neurosurgeon and a team of Doctors relevant for Paul who would be willing to operate on this amazing young boy.

Furthermore, I am looking for support in fundraising for this project, if you would like to be involved in this, email me at helpingpaul@hotmail.co.uk

For more information on Paul and the other work of Helping Paul please take a look at our website –
Or our blog –

Thank you everyone for reading about mine and Paul's story and helping us on the journey we are to embark upon together.
I love Paul so much and miss him everyday being here in England, but this only drives even more to get Paul the medical care he needs. With the determination and love that I have, I really feel that this is achievable.



Wednesday, October 1, 2014

40 Things About Turning 40.

1.  This was a scary age for me.  I remember when my dad turned 40... He had an "Over-the-hill" party and I was thinking..."Wow...He's so old!"

2.  This is the age my mom was, when her NF really became obvious...So this just worries me a bit.  NF will do what it's going to do....But I'd be lying if I said I wasn't scared.

3.  My wrinkles....Are no longer "laugh lines"....They are true honest-to-goodness WRINKLES!   My 14 yr old daughter came up to me the other night...Saying "wow...u have a lot of dimples.....Wait....those arent dimples, they're wrinkles..."  So yeah.  I got wrinkles.

4. Even though I am 40....I FEEL 20.  Part of this is because I am no longer 242 pounds....Losing weight has been the one of the best things I have ever done in my life.

5.   I have children with a sense of humor.....

6.  I understand my parents A LOT more now....Then I did 10, 20 years ago.  And I'm sorry for ALL I put them through. 

7.  I actually plucked my very first grey hair.

8.  I get called Ma'am A LOT. 

9.  AARP cold called me the other day....

10.   “The first forty years of life give us the text: the next thirty supply the commentary.” ~Arthur Schopenhauer

11.   I know what I want from life...But still not sure how to get it.  But I have the faith and determination to still keep going for it!

12.  I have always fought for what I believe in...Being 40, I am hoping people will take me more seriously.  Maybe.

13.  I have a very serious urge to create a 'Bucket List'.  Nothing too crazy....But GEEZ....There are some things I really want to do!!

14.  No body questions me when I say "I'm exhausted."

15.  I ordered an "adult drink" for my Bday....and didn't get carded.  

16.  Realizing that MOST of my friends are still in their 30's.  :/

17.    I honestly do NOT care what other people think of me.  Like me?  Hate me?  That's your choice and I am not about to change who I am, to get friends.

18.  After 40 years and SIX kids....I can no longer "hold it" when I have to go to the bathroom!  -sorry- (wait... no I'm not!)

19.  I used to obsess over the news.  Now...I rarely know what is going on in the world.  Which has actually been a GOOD thing.

20.  I have this weird thing, where I just want to have a yard sale and sell all the crap that I used to care about.

21.  EVERYTHING just costs way too much.

22.  I have known this forever...but life is really controlled with how much money you have.  It just becomes increasingly depressing the older I get.

23.  Accepting that my SQUISHY belly will forever be my reminder that I actually grew SIX human beings inside me!

24.  All the heart - throbs actors that I crushed on in my teens and 20's are REALLY OLD NOW!

25.  I can STILL move fast!  I can get myself and 6 kids ready and out-the-door in 15 minutes or less! (only if I HAVE to though, just sayin')

26.  Speaking of fast...I run a faster mile at 40, than I did when I was 15.

27.   I bought my first pair of Spanx.  

28.  I still laugh when someone farts.  Hey...Just 'cause I'm OLD...doesn't mean I have to be mature. :P

29.  I remember when I was a kid, and we had 2 channels to choose from -- And I always managed to find 'something' to watch.

30.  I'm old enough, that the "bad stuff" I did when I was younger.....Can't be found by searching GOOGLE.  *whew*

31.  I bought my very first Mu-Mu.  And it's rather comfy!

32.  I think I need Bi-focals.  I might as well get that chain around my neck too....Just so I won't lose my glasses.

33.  I have an almost 19 year old and almost 17 year old.  That's just frightening!

34.  My Drs are now wanting to run all sorts of tests on me...Mammograms, colonoscopys....YIKES!

35.  Realizing that in 11 Years...ALL of my children will be adults...*tears*

36.  Fear of death.  I seriously worry about what life would be like if/when I die.  And it scares the crud outta me.

37.  I pluck A LOT of stray hairs. :/

38.  Everything gives me heartburn. 

39.  I forget where I put things ALL THE STINKING TIME!