Day 6 - My Saddest Memory

I have several sad moments in my life that spring to mind, including the loss of loved ones.  And another one of the saddest moment of my life was when I suffered my miscarriage before getting pregnant with Sara.  That one still gets to me every year when that time of year rolls around.  I'm not sure that wound will ever completely heal.

But the saddest moment overall has to be Sara's diagnosis.  After 10 months of searching, it was a huge relief to have an answer...and with that a treatment plan.  But with this news I had to go through a new grieving process (not to mention a huge learning curve as well).  I realized that my daughter would never get to do lots of things she would if she were healthy, and that she would face battles as a small child that most adults may not be able to handle.  I can't help her, fix her, or really do anything but stand by and watch. It still makes me so sad to know that I am helpless to take this burden from her, or even make it lighter for her to carry.

Now that I've had 3 years to deal with this devastating news, I've come to a good place with it.  It isn't easy to accept I can't change it, but sometimes I don't have to.  I can advocate for my daughter, and by doing so bring awareness to others.  That helps to raise funds to do research, and maybe some day a cure will be found.

There are still days that I look back and replay that memory and it brings me to tears.  And by far, this is the saddest memory in my life that has had the biggest impact.  But I wouldn't change it for anything.  Its made me stronger, more resilient, and more compassionate toward others.  This moment in my life has made myself and Sara who we are today!  And no matter what anyone else thinks, I think we're both pretty cool girls!

Day 5 - My Friends

Here I am, blogging really late because its the weekend and I just thought of it! 

With that said, I've always been one to have a couple close friends instead of a lot of friends that I don't talk to all that often.  And what that means is that these friends aren't really friends at all, but just more of my family.  They are the family I've chosen instead of being born with!

First is Kimmy!  She hates when I call her that, but I just can't help it.  She's just like a little sister to me.  We haven't been able to see each other much recently since she's been going to school in New York, but when she comes home to visit we try to get together a lot.  Sara has no clue she isn't really her aunt, and I know that Sara misses her just as much as I do.  We can't wait for her to come home (and stay)!

And then there's Mary!  Mary and I have been friends for the entire lives of our children and most of our pregnancies.  We meet in an online support group for women who were pregnant and had lost a previous pregnancy.  We became very good friends quickly, talking every day.  And have stayed in touch even after leaving the support group.  Finally, this last summer, Sara and I got to travel to MN to finally meet Mary and her son, Jack!  Of course it was like we'd known each other forever, and we talk even more now...if that's even possible.

I have a couple other friends that I keep in touch with, and get the chance to see once in a while.  And I know that just because I didn't mention them all by name, that doesn't make them any less important.  You all know who you are, and I love each and every one of you!!

Life wouldn't be complete without my friends!  They've been with me (and Sara) through thick and thin.  They've come to the hospital late at night, babysat, and planned birthday parties with me.  I'm so lucky to be blessed with such amazing friends!

Day 4 - My Family

I'll try to make this short, although that might be hard since my family is complicated.

First off is my baby girl!!  Well, she isn't really a baby any more.  Sara's going to be 4 years old at the end of this month...and I'm in total denial about it!  Its just Sara and I at home, so as for the immediate family I live with she's it.  Well, and our dog, Tank.

My parents divorced when I was in middle school, so from here it gets kind of complicated. 

First is my dad and step-mom.  Dad married Amy when I was around 13.  We all work together, so we see each other often.  Between working together 5 days a week and spending extra time together with Sara, we've become quite close the last couple years.  I can't imagine my life without them.  They have been instrumental to my success at my job and as a mom, and I know that they will continue to be supportive no matter what life throws our way!  I owe them more than they will ever know.

Then there is my mom and step-dad.  My mom married Ed when I was in high school.  Ed had 4 sons from a previous marriage, so I went from being the oldest to being the 5th child...but still the oldest girl (which is really important in this family).  I talk with 2 of my step-brothers once in a while, but have no contact with the other two at this point.  Mom and Ed also took in Ed's two young grandchildren, Brian (8) and Alexis (6).  Lu and Obo (as Sara calls them), are the children of one of the brothers we no longer speak to.  So the kids live with them full time, and Sara and Lu are very good friends and love to play together every chance they get.  We all have lots of fun together!

I have a younger sister, Barb.  In the last year or so, Barb and I have really lost touch.  I've had some trouble excepting the choices she's made in her life, and so have distanced myself to some extent.  Usually when I see my sister, its when we all get together at my mom's for a holiday or birthday.  I really hope that at some point this relationship will be able to be healed, but we've never really been close so I don't know how it will turn out.  There's a lot of growing left to do before this relationship can probably even start to heal.

That's pretty much it for my immediate family.  My grandparents have all passed, and I have a couple of aunts on my mom's side and one on my dad's.  I'm close to both aunts on my mom's side, and we talk often, but I rarely speak with my aunt on my dad's side.

So that's it!  My very small, but complicated, family. 

Day 3 - A Recent Photo of Me

This is the most recent photo of myself I can find that doesn't have anyone else in it with me.  It was taken back in July at Rocky Mountain National Park.  It was one of the best days I've had in really long time!  We were just hiking around and found this really cool log, so decided to take a break.  While we were sitting there, a single deer ran by pretty close to us.  It was really cool! 

I picked this photo for two reasons.  It reminds me of that day, which was fantastic, and it is the only one of me I can find that was taken in the last year.  Its not a great photo of me, but it'll do!

Bad Day!

Today I'm having a bad day...and its of my own making.  I'm just angry and upset about a bunch of things that I have little or no control over!  And what makes me more angry than thinking about those things, is the fact that I have a bunch of amazingly good things in my life right now that I can't seem to focus on no matter how hard I try.

The thing that's bothering me the most today is the fact that I really want to go back to school...and I mean REALLY!  I always knew I would go back and get my master's (in what I have no idea), but I just can't seem to get to a point to make that happen.  I keep working hard to pay off certain things, make room in my budget, work toward having the money to go to school.  And it feels like every time I make some progress, something comes up and those funds I've saved for school end up somewhere else.  Its so frustrating! 

Of course, there are other things on my mind.  And with all these things in my way, I can't seem to find my happy focus I usually have.  My positive attitude toward life is just missing.  I can even list many great things in my life.  Like....

1. Sara, my whole world
2. Sara and I's continued good health
3. An amazing man who takes wonderful care of me and makes me feel like a princess
4. Family
5. Friends
6. A good job
7. A safe place to live
8. My dog
9. All the opportunities life has put in front of me and Sara
10. And many others...

And with all those even typed on the screen in front of me, I still don't feel any better.  Hopefully this melancholy feeling will be gone soon.  I want to get back to being the annoying, way too happy in spite of it all, positively crazy girl who always sees the silver lining.  Life is good, and I know it!  I just wish I could feel it right now!

Day 2 - My Blog Explained

This blog started because if I had to listen to one of my BFFs complain about how I wasn't on Facebook one more time, I was going to lose it.  (Love you Mary!)  So my blog was born.  I had no idea what to put on it other than to babble on and on about my daughter...she was the only thing going on in my life at the time.  I figured this was also a good way to keep family and friends updated about all that was going on with Sara's medical issues and our lives in general.  I only have to write it once, and they can go read it whenever they want.  Perfect!!!

And originally that's all this blog was for, but now there is a little more about me as well.  Some of my readers started implying that they wanted to hear my thoughts and ideas as well as read about Sara, so now I post about a lot of different things...mostly whatever comes to mind when I log on.  I also love that I can share videos and pictures of Sara's big moments in life! 

As for the title of this blog, it is also inspired by the very same friend.  She once told me that I need to write a book about all my me-isms (as she calls them).  She said that I had great ideas, and that maybe I should even start a religion....and that people would actually follow me, which I still think is crazy.  So the title of my blog is just that; my best efforts to explain my me-isms.  Its how I practice my life because sometimes I think the thought that I'm actually doing it is too scary.  Its about how I parent, think, and just plain live.

And there you have it....day 2!

Day 1 - The Big Intro!

Let's get this party started!!

No better day to start then the day everyone is talking about.  1/11/11!  So here I am trying out this challenge thing finally.  No more excuses on why I can't do it, and no more procrastinating.  Hopefully things will go smoothly and I won't miss any posts, and many of you know how very unrealistic that is with all that's on my schedule.  But I can do this, and I will do it!

Well, let's see....where to begin?  This is going to be long; I can feel it.

My name is Julie Frey.  I am 31, and have a beautiful 3 (almost 4) year old daughter.  She's the light of my life and I can't remember my life before her, and I can't imagine it without her.  Sara has NF-1, and because of that she has a lot of medical issues that are in constant flux.  Lots of appointments, testing, and surgeries have filled our past...but now she's doing great and we couldn't ask for anything more.  Its great to only have to go to the hospital for a day of testing every 6 months instead of a week long stay every month when she was sick!

As for my "professional" life, I work at the family business with my dad and step-mom.  I work in the manufacturing department as a test technician for video and audio distribution amplifiers.  For those of you who have no idea what that means, I test, build, and repair electrical products that are pieces of a larger video/security system.  Our products are used in planes, elevators, and anywhere you can imagine there might be a security system or video system.  We also build special custom products for the armed forces that help keep our troops safe and bring them home to their families.  I feel really honored to have such an amazing job that makes a huge difference in a lot of people's lives!

As some of you know, I didn't always want to work in the family business...I just kind of ended up there.  I have been to school for lots of majors, but the one that stuck was teaching.  I graduated from Regis University in May 2008.  But due to my daughter's health declining over the following 14 months, I was unable to obtain a teaching job.  Sometimes I wish that I could go back to it, but I love what I do now, even though it wasn't my original plan.  I know that I will probably never teach because of Sara's health.  I've come to terms with giving up my "dream job" for my baby.  I'd give up anything for her if I knew it was the best thing for her!

I'm a single mother, and it isn't easy.  But life is always throwing curve balls, and it is just one of those things.  I do the best that I can with what I have, and I think I do a good job.  Obviously there are good days and bad days, but I love having lots of one on one time with her.  I feel blessed to have so much time for the two of us to spend together.  We have lots of fun things we love to do together.  We go to the zoo often, paint and do other craft things, we play, watch movies, and just hang out together. 

And when I'm not doing the mom thing, I live another life.  Sara goes with her dad 2 days week, so that means I get to turn my mommy mode off (almost).  You always think about and worry about your kids, especially when they aren't with you.  So my mommy mode never goes off completely, but it gets to come really close.  And in my other life, I get to play the role of a girlfriend to the most amazing man.  He's sweet, kind, smart, talented, and handsome!  He takes exceptional care of me, and Sara too when she's here.  We've taken things really slow over the last several months, and we have the most amazing relationship.  I finally really know how it feels to be in a healthy, committed relationship.  I can't wait to see what the future holds for us.  It can only get more amazing from here!

And I guess I need to mention may hobbies really fast...so other then being a mother and girlfriend, I like to read, cook, and enjoy all the amazing wildlife and nature areas that CO has to offer.  And for those of you wondering; no, I don't ski.

So if you've actually read this far, I commend you.  But that's me in a nut shell.  Untill tomorrow!

Another First!!!!

We have been working with the PT clinic at TCH to find some good options for Sara to ride a bike.  They have located a tricycle that she can pedal with her hands, and that is in the works to get.  But they also think it would be good for her to have just a normal pedal bike.  Although with her legs, we weren't sure if she'd be able to move it at all.  Of course, we were not to be defeated and her therapist found a way to make it possible for Sara to ride a bike.

She has these neat little attachment pieces that hook on to the pedals.  Then she can use her entire foot to pedal, plus they have straps to keep her feet attached to the pedals.  So this makes it possible because Sara can use her strong leg to do most of the work, and use her weak leg when she feels strong enough.

I almost cried while shooting this video.  Sara's first bike ride EVER!!!!  And yes, the therapist is helping, but Sara is doing about 90% of the work to move the bike.

Guess I know what to get her for her birthday now!!  Hopefully I can find a bike to meet all the requirements that it has to have in time!

My Own Blog Challenge

Some of my fellow bloggers that I follow are currently doing (or about to start) a blog challenge.  I've considered doing this a couple of times, but never found one that I really loved and wanted to do.  But they have inspired me to stop using that as an excuse, and just do it!

So to fix this, I just decided to write my own.  Its taken me a while, but here is what you can expect from my blog challenge when I get it started.

1. Intro about me (as my life is now).
2. The explanation for this blog, and its title.
3. A recent photo of me, and explanation of why I picked that photo.
4. My family explored.
5. My friends explained.
6. My saddest memory.
7. My happiest memory.
8. Life's biggest challenge so far.
9. A book that has had an impact on my life.
10. My hopes for this new year.
11. Something I've lost that I really miss.
12. My favorite trait about myself.
13. My least favorite trait about myself.
14. My favorite color, and why.
15. What would I do with a million dollars?
16. My favorite season, and why.
17. The hardest thing about being a mom.
18. The best thing about being a mom.
19. What I watched on TV the night before.
20. The charity/foundation that means the most to me, and why.
21. What I think the meaning of my life is (so far).
22. My favorite cartoon as a child.
23. My thoughts on religion and God.
24. My favorite piece of art.
25. A song that makes me cry.
26. Something that always makes me smile.
27. My favorite vacation.
28. If I had 3 wishes...
29. A picture of something that makes me happy.
30. My goals for the future.

So there you have it!  I've taken the things I like the most from the 3 or 4 different challenges I've seen, and I've rolled them all into one to make a giant mess.  Should be a good time...at least for me to write, maybe not so much for you all to read.

Keep checking back if you're really that interested.  I will be starting my challenge sooner than later.

Sara's logic says...

Sara and I are watching Blue's Clues last night, and the episode is about how things grow.  You know, plant a seed, turns into bush/tree, then harvest the fruit/veggies.  Simple enough!

So as we're watching this my daughter speaks up with some of her amazing 3 year old logic that just can't be ignored or argued with.  Mrs. Pepper and Mr. Salt ask Steve where orange juice comes from, so of course he turns to the camera to ask the kids watching if they know where orange juice comes from.  And what does my darling angel say....

She says, "From the store!"

And when he explains that it comes from oranges that are grown on trees, Sara stands by her claim that it ONLY comes from the store.  That whole fruit tree thing can't possibly be right.

She then literally yells at the TV...

"My mommy gets it from the store, and there aren't any trees in the store, so you're wrong!  She uses that little card thing!"

I love 3 year old logic!  Its so simple!  Not to mention highly entertaining as well!

To start off the new year...

I know that many of us are looking forward to what 2011 has to offer.  I know that I can't wait to see all that it has in store for me!

And to wish you all a very magical new year, I bring you the very unique musical talents of Sara.  Hope it makes you smile as much as I did! (And in case you can't tell, she's preforming Twinkle, Twinkle, Little Star.)

HAPPY NEW YEAR!!!

We made it home...FINALLY!

Today, after a long cold night in the middle of nowhere, we arrived at home!!!  I've never been so happy to see my house as I was today.  It's so nice to be home.

After unpacking the car, and some much needed showers and clean clothes, we headed off to my mom's to see everyone.  It was awesome to eat a home cooked meal, especially since I didn't have to cook it!  We chatted and just hung out, and I know Sara was so glad to be crawling around and playing instead of still trapped in her car seat.

And thanks to all of you who pitched in to make this trip possible!  It was well worth it, even with all the delays getting home, and I couldn't have done it without any of you.  Thank you!!

Stuck in Laramie!

Well, just a couple hours from home they closed the highway due to blowing snow.  So here we sit in another hotel in Laramie, WY, only 2 hours from home, and its cold outside!  Right now it is measuring -1, feeling like -31!

Hopefully they will open the highway again in the morning and we will get to finish the rest of our trip. This isn't exactly how I pictured my New Year's Eve, but its better then the reality being sliding off the road and being stuck in a ditch all night in temperatures that could kill. I'll take a warm hotel room over that any time, no matter where it is.

So now we just wait for the time to pass.  I've just been told as I'm typing this that part of the highway is now open...of course...but its getting dark, the roads are icy, and its wicked cold.  Plus, the hotel room is already paid for, and its warm!!

Hopefully we'll get home tomorrow!  I know my dog will be thrilled if we do, and so will I.

Going Home!

Tomorrow we will be heading home to Denver!  I'm very glad to be going home, but I'm really glad we came too.  We learned a lot, and everyone was wonderful.

We stayed an extra day (being today) due to the weather.  Since we have nothing urgent to head home for, it just didn't seem smart to rush home in the middle of this large winter storm and risk getting stuck or stranded. 

So to kill the time today we went over to the local superstore so that Sara could spend her gift card that she received for participating in the study.  She got a new toy, and that helped her to pass the time today.  We also went out and had a a nice lunch before the snow started falling in the afternoon.  So with the snow falling again, and a lot of it, we hung out at the hotel watching TV and some of us napping. 

Hopefully our trip home tomorrow will be uneventful.  And hopefully it won't be too long either!

Good News Today!

We are back at the hotel from the appointments with the doctor and research group.  It went really well, and Sara was a trooper.

We met with the doctor first, and we spent about 3 hours talking and doing a very complete physical exam.  Sara hated the exam even though there was nothing to be scared of.  But the room was really cold, and I wouldn't have enjoyed stripping down either.

As for the doctor, he's great!  He's very knowledgeable and very nice.  We talked about a lot of Sara's current treatments and his opinion about them.  He thinks that we are completely on the right track considering all the complications that Sara has.  He said her doctors at TCH, especially her urologist, were doing a great job!  It was good to hear that I really am making the right choices for her, and she really is receiving the best care possible at this time.

As for his opinion on the amputation of her leg, he didn't recommend it.  He said that without a valid medical reason, like her tumors turning malignant, he doesn't think that would be in her best interest at this time.  He saw that Sara does use this leg with in the limits of her strength, and he thinks taking that would be a mistake.  So for now, it looks like we are on the right track in all regards of Sara's care.

The research team was great too!  They were really patient with Sara while she fought them about doing an ultrasound of her leg.  We eventually got it after Sara calmed down and realized there was nothing to really be scared of, but it took some time to convince her.  She also got measured for height and weight, and they also tried to draw some blood.  No such luck though, so we took the test tubes home and will try again when we put her under for her MRI in January.  Then all we have to do is overnight them back, and its all good.

As for our trip home, that has been postponed due to some major weather issues.  It is snowing here now, and suppose to keep at it until late Thursday.  Plus, one of the towns we have to drive through is currently under blizzard warning as well, and there is talk of closing the highway.  So with all that said, we decided to just hang out here tomorrow and head home on Friday.  At least then we'll be following the storm, instead of driving in it.  And I'd rather be stuck here, in a city with resources, then in a tiny town in a run down hotel on the side of the highway half way home.

Thanks to all of you for your support in this journey.  It means the world to us, and we could do it without you!

We Made It!

After 9 hours on the road, we safely made it to Salt Lake City!  We're checked into the hotel, and now all I have to do is get Sara to go to sleep....which could be tough since she's WAY outside her normal routine.  The drive was pretty uneventful, but we did see lots of trains (which Sara was super excited about), along with some elk and pronghorn. 

All in all she did great on the drive!  Thank you to the person that had the brilliant idea of putting DVD players in the back of cars.  Sara watched movies and played with her new video game that she got for Xmas the entire way.  There were a couple minor breakdowns, but she did much better than I thought she would since she has never done a road trip before.

I'm really looking forward to seeing this new doctor tomorrow, and talking with the team about the research studies.  I know that this visit could very well open a lot of doors for Sara in regards to how we care for her NF. 

Now that we're here, we just have to worry about the storm that's in our way of getting home.  Got to love bad weather with perfect timing and huge potential to ruin your travel plans.

Off To Salt Lake City, UT

Tomorrow morning Sara and I will start the drive to the University of Utah to meet with a new doctor for a consultation about Sara's NF.  Sara will also be enrolled in a couple research studies to help discover more information about NF in general that could help her now, and will definitely help others in the future. 

Its about a 7.5 hr drive, but I'm thinking it will take us about 9 hrs to complete considering we'll have to stop for lunch and every couple hours for Sara to get out of her car seat and burn off some energy.  Hopefully it will all go smooth.  As of right now, the weather service isn't reporting any storms between here and there.  Although, that isn't the case for Thursday when we're hoping to drive home.

I promise that I will blog about this little adventure as often as I can while we are away.  I know there are many of you that are anxious to hear what the new doctor and research people have to say.  Sara's actual appointments start on Wednesday morning, and may continue in the afternoon.  I'm excited to hear what they have to say, and to share it with all of you.

So until tomorrow....

Reviewing 2010 (and Santa pic)

Dearest Friends and Family,

Another year has passed us by in life, and in my opinion it was very fast!  I thought I would take this time to reflect on all that has happened this year...assuming I can remember it all.

In January, Sara celebrated her 3rd birthday.  She also had her first MRI of the year.
In February, we traveled to California and went to Disneyland.  Sara was very excited to meet Micky Mouse!
March and April passed by and where fairly uneventful for the most part.  Just appointments here and there, but that's nothing to write home about.
In May, Sara was admitted to the hospital for the first time in a year!  It was a relatively short visit, and Sara did great.
In June, we traveled to Minnesota to meet Mary and Jack in person for the first time.  It was a quick trip, too quick for me, but it was a blast!  I hope we all get the chance to get together again.  Sara also started at a new daycare, which she loves.
In July, Sara had her second MRI.  This completed her major testing for the year.
In August, Sara started back to preschool.
In September, I had an MRI to check to see if I had MS.  Luckily that scan was negative.
In October, we celebrated Halloween.  Sara was a monkey and for the first time really understood the theory of Trick-or-Treating.  I also attended an NF symposium that helped me to even further understand all that goes on with NF.
In November, I celebrated my 3rd 29th birthday.
And that leaves us with December, and our crazy life as it stands now!

Sara is doing really well.  Her kidneys are the healthiest they've ever been.  Sara is doing well in school, and is excelling above many of her peers in the areas of understanding language and problem solving skills.  Sara is very social with her schoolmates and is excited to go each day.  I encourage Sara's love for learning every chance I get, and I hope it never goes away.

I am still working at VAC, and I can honestly say that I can't see myself being anywhere else.  I love my job, even on the bad days.  I'm feeling really good right now, even though there were times this year that wasn't the case.  I'm happy to report that overall I'm doing well health wise, and plan to keep it that way.  I am also happy to report that I have a new man in my life.  He is amazing and treats both Sara and I like royalty!  Although he is probably unaware, he has really helped me to heal from several very old wounds I have carried with me for a very long time.  And no matter what happens in the future, I will always be grateful for all he's done for me and Sara these last few months.

Together Sara and I enjoy going to the zoo, doing crafts, and just playing in her playro0m together.  Its hard being a single mom and fitting everything into the schedule, but somehow I manage to pull it off.  And I know that I give Sara all the quality time I can...and make a point to tell her I love her everyday!  I know that as a mother I am succeeding in life, and right now that's all that matters to me.  Sara is happy, I'm happy, and that means life is good!

And if this was a real letter I was mailing, which it isn't because I'm too cheap to pay the postage,  you'd get a photo with it.  So here it is....Sara's picture with Santa for 2010.  Notice she isn't crying this year!  Another first for us in this amazing year!

Sara and I would like to wish all of you a very Merry Christmas and a magical and blessed New Year!

Testing Appiontment

As many of you know, Sara gets an MRI scan of her abdominal tumor every 6 months. 

Its time to mark your calendar so you all know when to call and bug me about how it went, as many of you do because you care so much.  And this means that you aren't really bugging me at all.  I love hearing from all of you and sharing with you how it went.

Her first MRI of the year is on Jan. 27th!

At this same appointment she will also have an EMG to check what kind of sensations the nerves in her legs can feel, and she'll also have her PET scan.  We do the PET scan every 2 years, and it is to check to see if any of her tumors have turned malignant.  We don't suspect this to be the case at all, Sara hasn't shown any signs of this, its just routine to be sure.  So don't panic!  I know some of you were for a second there.

Sara will have to be sedated for all of these tests for one reason or another, so this is an all day hospital trip.  But this is just part of the routine in our lives as far as Sara's health care goes.  I just can't believe its already been 6 months since we did the last one.  Crazy how time flies!

Date with Utah

As many of you know, although some of you don't, I have spent the last couple months trying to get Sara in to see a very highly recommended NF specialist at the University of Utah.  Its been a challenge to get in touch with the right people and wade through the paperwork demands and red tape.  But finally, yesterday I got a call to schedule her appointment.

Sara and I will be heading to Utah on Dec. 28th for an appointment on Dec. 29th at 9:30am.  Talk about bad timing!  The week between holidays is not what I had in mind, but when I started this whole process I told them we needed to be in by the end of the year because our insurance will be changing.  Cutting it a tad close are we?!?  But I won't complain since the doctor is coming in to the office just to see Sara; he's only suppose to be on call that day.  I appreciate the fact that he's willing to do that to accommodate the insurance issues.  Tells me that I really like this guy already and that going through all the stress to make this happen was worth it.

We will also spend the afternoon of the 29th in the research dept.  They are doing several studies there (its a leading NF research location), and I'm very interested in hearing about them and maybe allowing Sara to participate.  Some of them are as easy as just a blood draw to look at DNA or other cells, or an x-ray and ultrasound to look at bone density.  I don't see any harm in Sara joining these studies at this point, but I still have a lot to learn about them too.  They are also doing a couple of drug trials, using different medications to see if it will stop growth of the tumors.  At this point, I have no intentions of enrolling Sara in any study where medication or surgery would be a mandatory requirement. 

Now that the ball is FINALLY rolling, I just want to get there and hear what they have to say.  I'm nervous about it too, since I know that it will be a lot.  I also have no idea if we will be there one day or maybe more.  That will depend on what the doctor decides to do, like does he want any testing done while Sara is there.  Its hard not knowing how long we'll be gone, but we won't really know until we get there and start talking.  And then there's always the cross country drive through the mountains in the dead of winter to look forward to.  Oh joy! 

Christmas Shopping!

This weekend my dad and I took Sara to the large toy store to see what she thought she wanted for Christmas.  Santa was there, so she was really excited to wave to him (you couldn't sit in his lap), and she loved looking at all the toys.  We were in the store for a couple of hours just letting her explore and play with things until we got a really good idea of what she wanted.  It was a mad house!  You would have thought it was black Friday.  There was no where to park, not even a handicap spot.  And of course everyone brought their Christmas spirit...NOT!!!

Then last night I went back and bought the couple of toys I knew I couldn't get somewhere else cheaper.  Thank goodness it was pretty calm for the most part, and other than the fact that there was only one register open...and I was stuck behind an old couple obviously shopping for their grandkids, and the lady was complaining about the price of everything and saying that's not what their ad said...it wasn't too bad.  This large toy store isn't all that price friendly, so I will do the majority of the shopping other places.  But there is always that one thing you have to get there.

So I went in last night and got the major gift she asked Santa for and a couple of other small things.  $200 later, an injured shoulder, and my patience gone because of the little old lady, I was done.  And since I can only see my boyfriend on nights I don't have Sara, he decided to join me in the shopping instead of waiting at home for me to get it done and come over.  And boy, did he have a good time (until we got to the check out)!  We wondered around for quite some time playing with toys, pressing buttons on displays, and just enjoying spending the time together.  I wonder how many people thought we were shopping for our kids instead of my daughter?  And of course, he decided that he had to get her something too.  I told him he didn't need to, but once he sets his mind to something he rarely changes it.  So then we did the whole store all over again to find something he could get her...and she's going to love it!

It was so much fun!  The two best parts of Christmas are watching Sara open her presents and shopping for those presents.  This whole thing has improved my Christmas spirit dramatically, and its nice to finally feel like its the holiday season!  I can't wait to see Sara open what I've gotten her.  Its going to be awesome!  And to be honest, I hope Christmas gets here soon cause I want to play with it too. 

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.