Tree Trimming Blues

Sara and I spent an afternoon of our long holiday weekend putting up our Christmas Tree!  This was the first year Sara was really old enough to understand the concept and help with the task.  I handed out the ornaments and decorated the top, while Sara decorated the bottom.  She still has a little bit to learn, like you can't put 3 or 4 ornaments on the same branch, but we had a good time and that's what counts!

Here is the end result of all our "hard" work!  Sara said she thinks its the best tree ever, and that's good enough for me!

But even with the tree up, it still doesn't seem like Christmas is right around the corner.  I don't even feel like it could possibly be Thanksgiving.  Maybe its because of the lack of snow we've had this year, or the lack of really cold days. 

And it could be the fact that I'm not looking forward to it since Sara will be with her dad on Christmas.  I've never spent Christmas without her before, so I know that is going to be really hard.  Usually I feel like Christmas can't get here fast enough, but this year it seems to be bearing down on me like a train and I'm tied to the tracks.

This year will be very different than any year before it, and I have no idea how to handle it.  I guess there's no point in worrying about it till it gets here; there's nothing I can do to change it.  I just hope there's enough going on elsewhere that I don't have too much time to think about her not being there.  This year is going to be one of the hardest Christmas' I've ever had!

Happy Thanksgiving!

Sara and I have a lot to be thankful for this year!  Just to name a few...

1. Sara's good health
2. Our amazing family and friends
3. Our home
4. My job
5. The love we are blessed to feel everyday
6. And many more things!

I hope that all of you have a wonderful Thanksgiving this year with your friends and family!

Random Memories

It occurred to me today that Sara has had her wheelchair for a whole year now!  It was delivered to our house in early Nov. of 2009!

At this point, I can't remember what it was really like without it.  Sara has done extremely well with it, better than we thought she would.  She is well adjusted to it, and enjoys being in it.  She also has just learned how to crawl in and out of it by herself with very minimal assistance. 

I remember when she got it that it felt like this was a huge change, and a really big defeat.  I really think it was the moment I realized my child really wouldn't ever walk....and I was wrong of course!  But I remember having really mixed feelings about it.  Happy that she now could be more independent and do more things with other kids, and sad that my daughter really wasn't like every other kid.  I knew she wasn't, but it was very clear in that moment.

Now I just view it as being part of her.  It is part of who she is, and will always be.  And the wheelchair is very much like her in a lot of ways.  Its strong, fun, and amazing...just like she is!  I don't see it as a foreign thing, but as part of our family now.  And I'm sure that sounds odd, but I know my daughter wouldn't be able to do a lot of what she does now without it.  I can't imagine our lives without it now!

And most of all, I just can't believe its been a year!  Time goes by so fast!  Some day I'm going to figure out how to slow it down....I hope.

This time of year...

The time is upon us!  It is again that time of the year that most of us go out of our way to help others, make an extra effort to be politer than we would normally be, and act like crazy lunatics anywhere there is holiday shopping available.  Welcome to the holiday season of 2010!

It really feels like the holidays since we finally got our first snow flakes falling from the sky today.  Sara was so excited to see snow.  It made no difference to her that it was barely enough to even cover the grass, and that it only made the roads wet.  She was happy to see it, so at least that makes one of us.  On the other hand, I was much happier with the 70 degrees we were enjoying yesterday!  But alas, as much as I was in denial about it, I knew the snow would return eventually. 

The only thing I like about this time of year is the holidays.  I hate cold, snow, and that its dark so early.  So instead of dwelling on those things, I'm choosing to focus my time on the holidays...and all that yummy food!  I can't wait to start eating...turkey, stuffing, potatoes, roast beef, green beans, pies, Christmas cookies....I could go on and on!  Hurry up Thanksgiving; my taste buds are waiting!!  And the sooner you get here, the closer to spring I'll be!

Halloween Fun!

Its only Saturday of this weekend, and already Sara's candy bag is full!  She had 2 parties (yes, two!) at school and daycare yesterday.  I walked in to pick her up from daycare with 2 cupcakes on her plate.  Oh, all that lovely sugar!!  Let's just say, it made our evening very difficult.

Look at all that sugar!  Makes my teeth hurt just looking at it!

Then today we went to Boo at the Zoo!  We do this every year, and this year was no different.  It was a great time, and super busy as always.  It didn't take us as long this year to get around the loop, and I wonder if it was because it was just Sara this year (instead of her plus my niece and nephew) or if it was because this is the first Halloween she's had her chair and people pretty much just stayed out of her way.  Either way, it was a great day.  We weren't in a hurry, so the crowds didn't bother us any.  And of course, I took pics to share!

This bird really liked Sara!  Who knows why, but it kept pecking the window.

The river otters where out swimming for once, so that was nice to see.

Dad and Sara watching for the sea lion to swim by.

Sara's got this Trick-or-Treating thing down!

Of course, we rode the carousel!

Here we are in front of the monkey cage.  You can barely see him at the top of the picture.

Here we are at the end, a little tired and hot!  It was probably 70 out!

So there you have it!  Our Halloween adventures.  Sara will be going with her dad for the official day of Halloween, and Sara is really looking forward to it.  I hope they have a great time, whatever they do together.

Pumpkin Carving

Ah!  Let the craziness that is the holiday season (being the 90 or so days from the middle of  Oct. to the middle of Jan.) begin!

Today we did our first "official" act of this year's holiday season...we carved Sara's pumpkin!  Now I know those of you who know me well are shocked by this since I can't stand mushy, squishy, grossness at all.  But Sara really wanted to carve it, so Poppy to the rescue!  My dad sat down with Sara and they had a great time, and when the time came for Sara to stick her hand in and pull out all that mess...she refused!  Apparently she's been hanging out with me too much!  Oops!

Here are some of the pictures I took to memorialize Sara's first pumpkin carving experience!

Sara watching my dad clean out the pumpkin!

Drawing the face on the pumpkin!

Sara and her Jack-O-Lantern!

The three of us when we're all done!

NF Buddies

Last night Sara and I got the chance to meet up with Kelly and her son, Travis.  Travis is 3 years old and has NF like Sara.  You can read his story on his blog.  I'm so happy that Sara has someone to share her experiences with.  I'm so grateful that she isn't alone any more. 

Travis is a wonderful little boy!  He's so full of life and has such an amazing attitude.  He's cute as a button too!  They're a match made in heaven....and here's the proof!  I couldn't keep pictures this cute to myself!

How cute are they?!?  I just can't get over it!  And I know that this is a relationship that will last a long time.  Sara can't stop talking about how much fun she had.  I can't wait till we all get together again!

NF Clinic Visit

Yesterday Sara and I attended NF Clinic at TCH.  This is a multiple disciplinary clinic where several specialist come together at the same time and check on the kids and make sure that we're all on the same page and doing what's best for Sara.

First we saw Sara's rehab and physical therapy doc.  She's great and really informative.  Curtis brought up the idea of amputating Sara's leg, which has been on the "possibilities" list since before she was diagnosed.  He starting to think the time is getting closer, and I'm not at all on the same page.  We had a long talk about how we would know when it was time to make that decision, and all that would come with it.  She offered to let us visit the amputation clinic, or come to another appt with just her to talk about it.  I have no intentions of making this decision right now.  I don't think its needed, and Sara doesn't want to do it.  And if Sara doesn't want to do it, that's all the reason I need to say not yet!  We also talked about getting Sara an adaptive tricycle for her to ride, which is great!  And lastly we talked about options for maybe FINALLY getting her out of diapers.  Apparently there are options for Sara, which I had no idea.  So I need to review what she said, do some research and figure out what I think is best for her.

Next we saw neurology.  I had almost no concerns here, so she just checked Sara's eyes and reflexes and reported that I needed to make sure to get Sara in for her yearly eye exam.  I got the reminder post card last week.  She said she didn't see any issues, but it would be good for her to have a full exam.  Its very common for NF patients to have problems with their eyes.

Then we were seen by neuro-oncology.  I've been in touch a lot with this doctor recently while we've been changing the dose of Sara's medication to find a limit that works better for her in controlling the damaged nerves in her leg. All I wanted to ask was if it was time for Sara's PET scan, which we are suppose to do every 2 years.  This scan checks her tumors to see if any of them have turned malignant.  We don't suspect at all that's the case, but always a good thing to check.

Then we saw the geneticist.  Sara's regular doctor was out because of a family emergency, but the the doc we did see was wonderful and very informative.  We just talked about if there was any new medications or drug trials available, and no, there isn't.  So this was also a short visit.

Lastly we saw Sara's neuro-psychologist.  NF patients have a lot of issues with learning disabilities, so this is something we've been tracking very closely.  I don't think Sara has ANY issues learning, and I was right.  We tested her again this time (its been almost a year) and Sara did great.  We test in 4 areas: spacial and visual processing, fine motor skills, receptive language skills (Sara's understanding of language), and expressive language (how Sara uses language).

Spacial and visual processing is checked by asking Sara to stack blocks, match pictures, name colors, count, identify letters, fold paper, and other like things.  The test is scored in relation to how many months old a child is.  Sara is 44 months old, and in this area she scored at 54 months.  Meaning, Sara is almost an entire year ahead!!

In fine motor skills Sara was ahead quite a bit last time we tested her.  This was due to the fact that she hadn't been learning to walk, run, and jump like other kids and therefore had more time to commit to learning fine motor skilled activities.  Now she has evened out, and scores at 44 months.  She can cut with scissors, hold a pencil correctly, and draw certain shapes fairly well.

Sara's receptive language skills is another area that she scored very high!  She absolutely understands language, and what you tell her.  She can follow three step directions, and do many things when asked.  She scored at 59 months in this area.  Basically she has the understanding of a 5 year old (or 60 months).  Guess I can't get anything by her any more! 

Lastly, is Sara's expressive language.  Last time Sara was behind in this area, and started having speech therapy at school.  Yesterday's test showed that she has caught up very well, and will no longer need therapy.  She is expressing herself in an age appropriate way at 45 months.  I'm so excited she's caught up to her peers.  I think school has really helped this!!

This was a great visit overall!  I learned some new things, and the testing confirmed what I suspected.  My daughter is super smart!  Of course I came home with loads of homework...appt to make, things to think about, and time to return for Sara's new shoes in a couple weeks. Its always nice to know that I'm not over looking anything; it helps me sleep at night to know I'm doing all I can for her.

Awareness Day!!

I know that some of you reading this blog already know what today is, but some of you don't...so here is your educational lesson for the day!

Today is National Pregnancy and Infant Loss Day!  Today is the day that we all get a chance to take a moment to remember those we have lost along the way, no matter how briefly they may have entered our lives.

This "holiday" (I use that term loosely) was requested by parents and approved by congress as an effort to make the population more aware that miscarriages and infant deaths are more common than most of us think.  Many families are affected by this every year.  And no, we never "get over it" and we shouldn't be asked to.

Today all of us who have been through a loss get to bond together.  Today we will light a candle at 7pm, no matter what time zone your in, and let it burn for an hour in remembrance of those babies that we have lost.  This is the tradition for this "holiday", and I hope that everyone who reads this will participate, even if you haven't survived a loss yourself.  You can do it to show support to those who have, and help us put a wave of light across the world for our angels to see.

I am the proud mother of an angel that touched my life, and the lives of those around me, ever so briefly.  Its been 5 years, but I still think about it every day.  Today I light a candle for my angel, and all the others I know who are the parents of an angel along with me!

I Wish I Knew the Answer!

I have this friend who is going through a hard time right now!  She just got divorced after an ugly battle over finances and custody of their son, she's struggling to see the bright side of any thing, and she thinks she's fatter than an pregnant elephant.  And its totally NOT true!!!!

She's beautiful, amazing, stunning, creative, kind, loving, generous, smart, strong, funny, and the best friend you could ever ask for!!  She's an amazing mother, and she's the best unofficial therapist I've ever had!  She's the voice that leads me to the light when I'm struggling with certain things.  And she's always honest with me, no matter how much it might hurt!!

I wish I knew what to do or say that would help her to realize how beautiful she really is.  I can't change her self image, she has to do that.  But I wish that there was some way I could make her see that I love her for who she is and what she looks like RIGHT NOW!  And I want her to know I'm not the only one who thinks she's stunning.

Hey Girl,

I love you, and you're beautiful!!  That's all there is to it.

Julie

NF Symposium

Today Sara and I attended the NF Symposium to hear information about NF and what is going on in the community.  My dad attended the lectures with me while Sara went to the Kids Club to play. 

The lectures were full of valuable information, although most of it I already knew.  The first lecture was specifically about plexiform neurofibromas (pNF), which are the fancy medical term for the type of tumors Sara has.  Mostly she talked about what they are and how they work, which I mostly already knew.  This lecture did hold the one bad piece of information of the day, which is the fact that Sara is at increased risk for having one or more of her tumors turn malignant (cancerous).  Sara has a 10% chance of this happening.  There are several drug trials currently going on involving children with pNFs.  They are all in Phase I or Phase II currently, which means they are years from being completed, let alone FDA approved.  But hopefully one of them will show progress in stopping growth of the pNFs, or even shrinking them, and years from now there will finally be a medication to help NF patients.

The second lecture was about cognitive function and learning disabilities in NF children.  This lecture was fascinating, but I'm not to worried about Sara in this area.  The doctor stated that children with NF show signs of learning disabilities very early on, and Sara is actually at the other end of the scope in the fact that she is excelling beyond her peers.  Apparently most people with NF have a lower than average IQ rating, but again I doubt that is the case with Sara.  The doctor who gave this lecture is one of Sara's current doctors, so after her lecture I asked that we retest Sara at NF clinic (which is on the 18th) because I wanted to see where her cognitive skills sat currently.  I know where I think they are, but that may not agree with what the test shows.

The third lecture was about eye care in NF patients.  Honestly, I tuned out for the majority of this one.  The speaker was boring and monotone.  And all he pretty much talked about was tumors in the face and near the eyes, none of which Sara has.  He used a lot of big words, and most of what he said was beyond me.  It just wasn't a very good presentation in my opinion.  He obviously didn't keep his audience in mind.

The last section of the symposium was a panel of 4 people currently living with NF.  I found it interesting to hear what they had to say, but none of them where younger than 25.  And by the time Sara is that age, there will be so much more known about NF and maybe new treatments.  So I didn't find this all that useful, but maybe as Sara gets older I will.

Over all it was a good day!  I learned some new things, some good and some bad.  But mostly it was great because I got the chance to spend time with other members of the NF community, and that is always a good thing.  Sara got to play with other kids her age, some with NF and some without, and I got to discuss NF with other parents.  Since there aren't a lot of answers for NF, mostly just questions, its just nice to know that there are other people out there and you aren't alone.  Since science can't always provide the answers, you sometimes I have to come up with them on your own.  And honestly, who better to brain storm with than someone else navigating the same rough sea as you.  Together we are strong!

Independence: Blessing or Curse?

Sara is rapidly getting more and more independent every day!  She's already more independent than most kids her age, but I think she over compensates a little due to her NF.  I've been encouraging this new independence for most of this year, since she really starting showing it back around her 3rd birthday.

But her newest task she's asked to tackle alone is a little out of her league I think.  Would be nice if she was 10 years older, but by then she'll just refuse to do it.  Sara wants to do laundry!  She wants to do it all by herself too, which she obviously can't.  One problem is she can't reach the washer to put the clothes in.  There are lots of other issues as well with this whole idea.  So to compromise, we now sort laundry together, she helps me gather it up by putting hers in the hallway, and she helps me to fold it once its done (which really just means I end up folding everything twice).  She also helps by telling me where everything goes, like I don't know.  Who do you think organized this room in the first place? And do you think I can show her this post in 10 year when she's refusing to do her own laundry?

Sara's other big move toward complete independence has been that I no longer read the story at bedtime, she now reads to me.  We've been working with her letters a lot, and its starting to pay off.  She still reads mostly from memorization of the book and by looking at the pictures, but that is how all small children start out.  It is completely appropriate reading techniques for a child her age. 

We've also started cooking together, which she loves.  I don't have a lot of counter space, but that hasn't been as much of an issue since Sara started helping out.  Now we do everything at our kitchen table since then she can sit in her chair and I don't have to hold her up.  Just drag an extension cord across the dining room, and plug in the mixer.  She loves it so much I ended up getting her a hand-me-down play kitchen for her playroom.  She's played in it every day since I put it in there.  Maybe Santa can bring some play food for it this year!

There are tons of other tasks she loves to do as well, and I'm glad she wants to try new things, but it makes everything take so long.  I sometimes get upset because she takes so long to do everything, and it will make us late getting out the door to school or interfere in some other way.  I'm trying hard to be patient, but there isn't always time for her to do it herself.  And its so much more work for me.  Being a single mom and taking care of a house is a big enough task, but now that I have to do things twice, its twice the job and I'm twice as tired.  Ah, the joys of parenthood!!  A year from now, I'll come back and read this post and probably wish that this was still my biggest problem.  I'm sure by then there will be something more on the horizon that will have to be adjusted to, there always is.

New Pictures!

Last weekend my mom insisted we all get together for some family pictures.  Sara had just had school pictures taken at her preschool on Thursday, and daycare on Friday, so she was well practiced.  She did great, and tried to hog the camera.  She wanted to be in every picture, but there were a couple she didn't get to be in.  And of course, Moosie was with us as well (like he always is these days).

Here are the highlights...

Sara totally stole the photographer's heart!  She even told me I should be entering my baby in a Beautiful Baby Contest.  I don't think so.

Sara with Mommy!

Sara with her Auntie Barb (my sister)!

All the "kids"... (from left to right, and top to bottom)...Barb (my sister), Alexis (aka Lulu), Me, Sara and Moosie, and Brian (aka Bobo)!

And the "whole" family...(left to right, and top to bottom again)...Bonnie (my mom), Me, Brian, Ed (my stepdad), Sara and Moosie, Aunt L.A. (my stepdad's sister), Barb (my sister), and Alexis.

So there you have it, just a handful of the many photos we took!  It was crazy getting the kids to cooperate the whole time, but it was worth it.  But I think for now, I have enough pro photos of my daughter to last a while.  And I'm sure once I get her school and daycare photos, I will be posting those as well.

Two of a Kind...

It would appear that Sara is finally not alone with her NF, or even how it affects her body.

The Children's Hospital in Denver holds a multiple disciplinary clinic for NF patients once a quarter.  After the July clinic, the Genetic Coordinator emailed me and asked me if I would be willing to communicate with a family that had just entered the program.  Their son is 3 years old, and has similar leg problems to Sara, so she asked if I would be willing to chat with the mother about Sara's case.

We have been emailing once or twice a week since that time.  Her name is Kelly, and her son is Travis.  You can read Travis's journey with NF on his blog (There's a link to his page on the right under My reading List.).  I find it very unfortunate that we have to meet under these circumstances, but I'm so glad we have.

And we did finally meet face to face at the NF walk earlier this month!  She has a lot on her plate with 3 sons and a husband, the youngest son with NF.  Sara and Travis were both quiet, and seemed to be just checking each other out.  We are planning to get them together again in Oct. when it will be a little less chaotic.  I can't wait!

I'm so glad that now neither of our children have to face all this alone.  They are close in age, both 3 years old, and they have similar presentations of NF.  I don't know how Kelly feels, but I think it will be great for them to have a friend that is just like them.  I really hope that we will be able to get to know each other much better, our kids get to know each other better, and that we can get together as often as possible.  They live a couple of hours away, so getting together probably won't always be easy, but hopefully we will make it a priority.  And if nothing else, we'll always see each other at the hospital (not that its an ideal place to hang out).

Sara and Travis are no longer alone, but neither are Kelly or I.  I'm so grateful not to feel alone any more when dealing with Sara's NF.  I have lots of support from family and friends, but it isn't the same as having another mother to relate to who is going through the exact same things as I am. 

Thank you Kelly and Travis for coming into our lives!  We can't wait to see you next week at the conference!!

MS or no MS??

Yesterday evening my doctor called to give me my MRI results.  I'm happy to report that the test was negative!  I don't have MS (or a brain tumor)!!!  Its a great relief to know that isn't what's going on, especially since it can't be cured and all they can do is manage symptoms. 

As for how I'm feeling, I'm less tired put still have joint pain.  At this point, I plan to keep notes of how I feel each day and see if it progresses before going back to the doctor.  We have eliminated all the things that the doctors could readily think of, so now its more of a shot in the dark.

Overall, I feel good.  I'm relieved not to have MS, and I'm not as tired.  Things are getting better!

I Survived My MRI!!

I had my MRI today.  It was a scan of my brain to check to see if my mystery illness was MS.  I don't have any results yet; I'm hoping by the end of the week to know something.

As for the scan itself, it went well.  The nurse who put in my IV was amazing, and did a great job!  I don't even have a bruise, which is unusual for me.  All I remember was laying on the table of the machine, her putting in the drugs, and then waking up in recovery.  So all in all, it was perfect!! 

And apparently I sent some texts and made a couple calls when I woke up in recovery, but I don't remember sending them.  So if you got one and it made no sense, sorry about that!  My bad!

The 2nd Annual Denver NF Walk

Today Sara and I participated in the NF Walk to help raise money for The Children's Tumor Foundation.  It was a ton of fun, and the turn out was great!  The weather was much better too than the 2 degrees and snow we had on walk day last year.

I want to take a moment to thank all of you who donated to the cause, or walked with us today!  Sara and I thank you from the bottom of our hearts.  Your support means the world to us, no matter if it is financial, emotional, or something else.  We couldn't do this without you!  Thank you!!!

Here are some of the pics that I took while we were there.  I didn't take any during the actual walk, but before and after.

We got there early, so Sara had time to swing at the playground before starting out our walk.  I think this was her favorite part of the whole day!

This is Sara and I after we walked (well, I walked and she rode). We had hot dogs and chips that were provided for walkers while sitting in the shade of this beautiful tree.

And Kim, this ones for you!  Patrick came to walk with us and show support.  It was a ton of fun, and I hope he had a good time too.  He's smiling after our long walk, so I took that as a good sign!  And no Kim, you are NOT allowed to take his shirt! 

Another successful walk, and another great fundraiser to help find a cure for NF (and probably cancer too since their so closely related).  It feels good to know that I'm helping others.  It was a good day!

Just One Moment...

Today is a sad day in our nations history, and it only seems right to take a moment to reflect on it.

As all of us know, on this day 9 years ago some 3,000 Americans lost their lives because of fear and anger that led to violence.  It was one of the biggest tragedies our nation has ever faced.  And like everyone who was here then, I know EXACTLY where I was and what I was doing when I heard that a plane had flow into the first tower.  I will never forget the moment I realized our entire nation was under attack.

My heart goes out to all of the family and friends of those that lost their lives that day.  I know that many of them are still looking to make some kind of sense for their loss.  I hope that they know that an entire nation is rallied behind them. 

I ask that God give them the strength and comfort that they are still yearning for.  I ask that He continue to watch over this great nation, and all of its citizens.  I ask that He help to bring peace to an angry world full of hate and misunderstandings.

Let us never forget this day!  For when we forget is when history repeats itself!

UNITED WE STAND!

Government Programs Suck!!

Why do we have all these government programs that are suppose to help people who are in need if they refuse to help those of us who really need it?  We all know that people are taking advantage of these programs, like welfare and food stamps.  My questions is how is it that the government thinks its okay to let that happen, when people who really need the help and are working hard to make ends meet can't get it?

Sara and I were applied for a program by Sara's DDRC (Developmental Disability Resource Center) coordinator to get some help with some of Sara's living needs.  But I don't qualify!  I make too much money, even though it isn't enough to make ends meet.  She also applied me to get daycare assistance, but I make $96 too much a month to get that either.  But if I were to quit my job, I would get welfare, food stamps, daycare assistance, government housing, and a whole slue of other assistance free that I would never have to pay back.  Its no shock that anyone on these programs isn't motivated to get a job and do it on their own.  Why work when you can live off the rest of us?

It makes me crazy that I would "make" more money a month not working, than getting up and being a productive member of society!!!  WTF?!?!?!?  Don't they realize that by helping me for 6 months or a year by paying my daycare or part of my rent, that gives me a chance to eliminate some other debt so I can turn around and use that money to then pay daycare or rent and make ends meet on my own?  That it would give me the chance to get on my own two feet so that I would no longer be forced to decide if I should pay a medical bill so it won't go to collections or put food on the table for my daughter?  I have no desire to be lazy and live off the government forever, and I'm not trying to scam them.  But because of the ways these programs are designed (which is horrible and completely useless) I can't get any help.  Instead of helping me for a year and then using that money to help someone else, they'd rather give it to the woman who keeps having kids just to stay on the programs for 10 or 15 years.  She never works a day in her life, and usually the kids turn out to be super upstanding citizens themselves...NOT!!

I'm so over it!  I give up!  I don't know what else to do.  And I hope that the feds don't show up on my doorstep after I post this, but you never know with the way things are going in this country!  I'm sure I'll get one nasty comment from someone who hates what I've said and thinks its unfair.  Life isn't fair people...obviously!  So feel offended that I'm pissed at the government and all the people who take advantage of it, feel offended that I singled out certain people and said not nice things about them, I don't care.  Honestly, I hope this post does make you angry, but not at me.  Nothing will change until the people demand that it does, so be angry if this makes you angry...but do something productive with that anger.  If you don't, then its just a waste.

2010 Denver NF Walk

Sara and I will again this year be participating in the largest fundraiser of the year for the NF community in Denver.  Last year was tons of fun, you can read about it here.  It was one of the coldest days all winter, and the first real snow of the season.  Hopefully this year the weather will be a little better.

We look forward to spending the day with family and friends, and with our extended NF family.  It's going to be really exciting, and its great when we can all get together and work toward finding the answers to this disease.

To find those answers, we need your help!  Sara and I have set a goal to raise $500 for this year's walk.  You can help us reach that goal by donating on our Event Page and making a donation.  Or if times are hard for you, like it is for many of us, you can sign up to walk along with us on the page as well.  Its free to register, and it just takes an afternoon of your time to come and walk.  Know that when you donate or register, you aren't only helping Sara but all the children and adults that are suffering from NF.

Thank you for your support!  We are truly blessed to have such amazing people in our lives.