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.