Friday, December 31, 2010

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.

Thursday, December 30, 2010

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!

Wednesday, December 29, 2010

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!

Tuesday, December 28, 2010

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.

Monday, December 27, 2010

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....

Wednesday, December 22, 2010

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!

Tuesday, December 14, 2010

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!

Tuesday, December 7, 2010

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! 

Monday, December 6, 2010

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 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.