Wednesday, September 26, 2012

NF in the News

I have mixed emotions about this news article.  There are tons of them on the web about this story, but here is a link to one.

Sperm Donor Passes Genetic Disease to Babies

This article says its 5 babies, other ones say 9.  But that isn't what matters.

Here's how I see it...

I'm glad that NF is in the news, but when they report about it could they get the facts right?  Lots of these articles don't list correct information about the disease or any information about it at all other than its name.  I just wish that just once when I see an article mentioning NF it had correct info, and a decent amount of it.  Listing 3 symptoms of the disease doesn't even come close to telling people what it is or what it can do.  Want to know what some of the symptoms and facts really are?  Check out this list on the CTF website.
NF Fact Sheet

I love how they call it rare.  Its not that rare people!  One out of every 3,000 people are born with it in this country.  And from the CTF website...
"(Neurofibromatosis) ...affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined." 
COMBINED!!!  Yet most people have heard of one or more of those diseases! 
And how was the sperm bank suppose to catch this?  My guess is the man probably didn't even know he had it until one of the children his sperm produced was diagnosed.  Testing for NF is not commonly practiced.  You have to ask specifically to have it, and even then its hard to get.  I've been trying to get tested almost since my daughter was diagnosed 4 years ago.  And between difficult insurance and doctors who don't know any thing about it, it has yet to happen.

I feel bad for these parents and children that have to go through this.  But like all of us living in the NF community, I hope they find the strength and support they need to muddle through something that is so misunderstood and difficult to treat.  I wish them the best, and hope that these children are some of the lucky ones who experience few, if any, symptoms.

Tuesday, September 25, 2012

Ever have one of those days...

I've had a few recently (with no end in sight), and I just tell myself to keep moving forward and to smile.  The good things out number the difficult, but when the difficult one is so large its hard to focus on the great things.  I "stole" this image off a friend's blog, and it pretty much says it all when it comes to particular aspects of my life right now.

To all of you who need a smile today!

Tuesday, September 18, 2012

Is it really bragging?

Is it true that every parent believes their child to be gifted?  And that every parent brags about their child's strengths?  I know every mother thinks their kid is the cutest, and every parent wants to believe that they have the smartest kid in the class. 

I have been told by more than one person recently that my child may not be as smart as I claim she is.  But at the same time, I have 3 years of testing from the local hospital and now school testing from the beginning of this year to prove that my child is ahead of most children her age.  Knowing where these comments came from, I wonder if there is some kind of jealousy or similar emotion involved.

This comment came about from someone when they asked what was going on in our lives and I told them I had recently filled out the application to get Sara into the GT (gifted and talented) Program for next year.  I got the response of they weren't surprised I would do that cause I was always bragging about how smart she is.  But you asked me what was up!!

Maybe I'm over sensitive about it because I feel like I always have to point out her strengths since most people only see her weaknesses.  Sara is ahead of her class according to testing and her teachers, so is it bragging if its true?  And is it bragging when someone asks you about it?

Maybe I do brag about how smart my little peanut is, but doesn't every parent brag about their child's strength??

Honestly, when it comes down to it I just don't care if people think I'm bragging or not.  I speak the truth as I see it...and as I have been told it is by professionals.  Call it bragging if you want, but you asked!

Monday, September 17, 2012

2012 Denver NF Walk!

I know its taken a me a week to get this post up, and I'm sorry.  There were about 400 pics to sort through, so it took a bit.  But here are the highlights for your viewing pleasure.  It was the best walk yet!

The kid's fun run and carnival!

 Sara receiving the NF Hero Award and the walk!

Our team photo!

 It was a great day, and we raised a lot of money to support NF research and clinics!  Can't wait to do it again next year!

Thursday, September 6, 2012

All the Craziness...

I feel like life never slows down these days!  Every time I get one thing done or under control, I go back to a list that is even longer than it was before I started the last task.  Let me give you a quick recap of the nuttiness these days.

Mostly the things I have been working on either involve Sara's medical status and appts or her school.  No surprises there!  Sara has an appt with her orthopedic oncologist on Oct. 16th to schedule her surgery and do the pre-evaluation. 

Also there is multiple tasks for the NF Walk, which is only 2 days away!  I volunteered for the planning committee this year, and I'm so glad I did.  It was a TON of work, but it was completely worth it.  This is going to be the best walk we've had in Denver yet, and I can't wait to see how it all goes.  I really think we've made some great changes this year that will really bring it all together.

Sara and I also have a roommate, my BFF Kimmy!  She lived with us back in 2010, and moved back in last month.  Its so nice to have her back with us, and its just nice to have someone to talk to, hang out with, and who understands all that is going on with Sara.  She's been on this journey with Sara and I since the moment of Sara's conception.  In all honestly, she's like Sara's second mom.  She parents Sara like I do, and makes sure Sara does all the things she needs to.  She doesn't cut her any slack because Sara has NF.  I trust her completely at all times with my precious little girl, and I thank God so much for bringing her back to us.

Sara is loving school!  She wheels herself out of the classroom at race car pace every day with a huge smile on her face and tells me she had the best day ever!  I'm so glad she loves it so much.  She's at the head of her class, and tested at a level in her assessments last week that would be equal with a child about to finish 1st grade.  Honestly, I can't say I'm surprised by this.  With both Kimmy and I having degrees in elementary education, everything in our house is a teaching opportunity. When Sara asks us which way to go in the store, we never just point and say "that way."  We always tell her we need to go left or right, and ask her if she knows what way that is.  We also make her read the shopping list, help us count things or read labels.  Sometimes I feel bad for Sara.  It must suck living with two teachers...her brain never gets any rest.  LOL!!

Well, for now that's all I've got.  But I promise I will be posting all the days events from the NF Walk next week.  Its going to be super exciting and full of surprises for Sara!

Until then...