Monday, December 19, 2011

Visit with Santa

We went this weekend to finally tell Santa what Sara wanted for Christmas!  Sara is in the prime of believing in the magic of Santa, and its amazing to see.  She told him she wants a new play kitchen (check), and a new Cars video game for her Mobigo (and check).  Of course, Santa promised to bring her everything she wanted.

We also had the other kids with us as well, so everybody got their turn, even the newest one.  Here are a couple of pics I thought you all would enjoy.



Merry Christmas everyone!  May you have a truly magical holiday!


Tuesday, December 13, 2011

Rest In Peace

Yesterday ended on a very dark note in my family.  I spent the evening at my dad's house with him, my sister, my step-mom's parents, and my boyfriend.  We were all gathered there, with the police and the coroner.  My step-mother, Amy, died at home!

I don't think its sunk in for any of us yet.  It was so sudden, and the wound so fresh.  All of us keep wondering if there was more we could have done to help her.  She was sick such a very long time.  I'm glad she's no longer suffering, but I wish there was something we could have done to make her better.

Of course, I am doing all I can to support my dad through this very difficult time.  All of us are.  I'm worried about his MS, and how it will be affected.  I don't want him to have a relapse and this already incredibly difficult time be even worse.

And through it all, I keep thinking of Sara.  She's with her dad right now, and I wish she was with me so I could hold her and tell her how much I love her.  But she needs to be with him while I help my dad make arrangements and deal with insurance and things.  Plus, how do you explain death to a 4 year old?  Its something I'm not ready for or know how to do.

Rest in peace Amy
You will be greatly missed
Love you
Woof


Sunday, December 11, 2011

2011 Christmas Letter

Dearest Family and Friends,

I can't believe that another year is almost over, and what a year its been!  I think our biggest news of the year is that Sara made it the whole year without having to be hospitalized for any infections!  Every day that passes is a new record in that department.  Currently it's been 18 months...and counting.

As for school, Sara will be headed to kindergarten next year.  I can't believe it!  How did she get to be so big?  Currently Sara is the smartest kid in her class (and yes, I know every parent says that, but I have the tests to prove it).  She is academically ahead of her peers in almost every area, and her math skills are almost at a 1st grade level.  She is already starting to read and has quite a few words she recognizes on sight.

Sara may have some challenges coming up on the health front, but that has yet to be decided.  This year was actually a pretty easy year in regards to the medical portion of our lives.  Sara's Jan. MRI was so good that we decided she didn't need to have one for another year.  She had a second one in Oct and the results were the same.  Her abdominal tumor hasn't showed any growth, her kidneys are doing really well, and overall she continues to be defying most of what the doctors think she will do.

Sara has grown leaps and bounds in her mobility this year.  Sara is walking more at home, but still uses her wheelchair and crawling to get around at school.  She is doing some table surfing at school, but it takes her a long time and I think she's worried she'll miss something cause she's so slow that way.  But she now has the upper body strength to keep up with the other kids when walking in line, and being the line leader is her favorite part of school.

As for me, I'm still working for my dad at VAC.  I love my job and the people I work with.  I can't believe I've been there 4 years already, and that its the longest I've ever stayed at a job.  The thing I love the most is things are never the same.  I can't even keep my daily routine the same for more than a week or so before a project or crisis comes along to change the rules.  And I also really love that a lot of the work we do is protecting our troops and bringing our service men and women home safe!  It gives me great pride to know I do something that helps so many.

The only other major thing in my life (other than my wonderful job and my beautiful daughter) would have to be my boyfriend.  Kevin and I have been together for 2 years now, and its wonderful.  He is the most kind and caring man I've ever met.  He treats both Sara and I like royalty and is always finding new ways to spoil us both.  I can't imagine not having him in my life now!  Through all the drama that is my family, he just takes it all in stride.  He's so amazingly tolerant of my random emotional break downs and my completely neurotic moments; there is no way there is anyone else out there as patient as he is.  And he is so good with Sara!  They get along so well, and Sara really has developed a wonderful relationship and attachment to him.  We really are starting to become a small family, and its a good feeling!

When I look back at this year, I see what an amazing year it has been!  I look at all the blessings I've been fortunate enough to have this year and in my life always.  I'm ever so thankful for all that God has provided for me and my family, and that he has kept Sara healthy for these last 18 months.  I hope that God will continue to bless all of his with his astounding grace and forgiveness.

I hope that each and every one of you has the most joyous of holidays!  Sara and I would like to wish you a very merry Christmas and a most happy new year!


Friday, December 9, 2011

The Dentist

Sara did great at the dentist yesterday!  Of course, its easy to be a good patient when you don't actually have your cavity filled.  Let me explain...

This was a new office we had never been to, and I was hoping it was good because the lady I took Sara to last week was unimpressive to say the least.  I walked out of there knowing I would never bring Sara back there again.  The only thing she did right was refer us to this guy to have Sara's cavity filled instead of trying to do it herself.  She never asked about any of the medical information I put on the form, like the meds Sara takes, what she's allergic to, or what type of kidney problems she had.  She forced Sara to comply instead of just explaining what she wanted to do, which is what Sara likes and what I told her to do.  Sara does just fine when you explain to her what you're going to do and how its going to feel, but this lady refused to change her style at all. 

And I cannot say enough about how much I love this new dentist!  He actually asked me about the medical history I put on the form...unlike the previous lady.  And since he was unfamiliar with NF, he asked about it so that he knew enough to make good decisions for Sara.  And after discussing it, he decided that even though our appointment was to have Sara's cavity filled he wasn't going to do it.  The reason?  He wants to consult with her urologist to make sure the drugs he wants to use aren't going to be too hard on her kidneys.  Brilliant!!

At that moment, I loved this guy because he really was concerned about what was best for my child.  And then instead of shooing us out the door once that was decided, he took the rest of the appointment to sit with Sara and talk with her and explain things around the office and make Sara comfortable around him.  Then when she was comfortable, she let him look at her teeth.  She opened her mouth willingly and he even got to poke around, clean her teeth, and take xrays!  I didn't have to hold her hands down so she couldn't cover her mouth, try to calm her, or leave the office with my child in tears.

This is definitely the dentist for Sara!  He also told me that to make sure her tooth doesn't have issues later he preferred that he put a crown on it just because of where the cavity is located on the tooth itself.  And he also told me he can save her front tooth, something the last lady said was not an option.  Sara face planted about 6 weeks ago, busted up her lip and ever since then one of her front teeth has been getting darker and darker gray.  I figured it was already dead, but he said he could save it.

So Sara is headed back to the dentist in a couple weeks.  She will have a crown put on her back tooth with the cavity and she will have a root canal done to save the front tooth.  My daughter will also have her first cosmetic procedure when he changes the color of the tooth with some resin so it isn't an ugly gray color any more.  I'll be glad when its done, but I'm not nearly as freaked out about it as I was today before meeting him.  Sara is going to do fine, and I know its all for the best.  This guy I trust, and Sara does too (that's what's really important). 




Monday, December 5, 2011

The News

Okay, okay! I know I haven't blogged in a long time, but you know how it is. Life just got in the way...like it always manages to do.

With that said, here's a little catch up.

Sara is doing great! She's the most advanced student in her class academically, and she is as healthy as she's ever been...except for a cavity. Oops, guess I need to be more forceful in demanding to help her brush her teeth. She doesn't want help brushing her teeth, and so I decided not to fight it. I stood there and directed, but was forbidden to touch the toothbrush itself, and I figured that some brushing was better than no brushing. Guess I was wrong!

So today I have to take Sara to have her cavity filled. I honestly think this will be one of the hardest appointments for Sara. Now I know that sounds weird considering all the MRIs and other things she's done, but the difference this time is she'll be awake. This time she has to be cooperative and there will obviously be some pain involved...pain she'll remember when it's over. She hasn't been through an appointment involving pain while being awake since she was super small, but yes she's had IVs. I don't know about you, but I think a stick in the arm is far less painful than a poke in the mouth, so I expect this to be difficult. I hope I'm wrong!

And at the same time, and I know this sounds so wrong, I'm relieved that for this one time my child is going to the doctor for a normal kid thing. For once she gets to be a "normal" child and experience a perfectly normal kid thing (even if it isn't a fun one). Her NF will not play center stage just this once, and I'm so glad for her. Doctor appointments not involving her NF are pretty much non-existent, so this is a nice change...even though it is one more appointment.

But other than that "small" hurdle, we're both super excited about Christmas. We've put up our tree, decorated our house, and been reading the christmas story a lot. Santa has been super busy shopping, and is happy to say that he's already done this year...thank goodness. And it doesn't hurt to have the naughty list on your side either when certain small ones don't want to clean their room.

Overall, life is good! I have no complaints, and am continuially reminding myself how blessed I am in my life. I have much to be grateful for this year, and feel so lucky to feel so blessed and happy in my life.

Monday, October 31, 2011

NF Clinic

Today Sara attend her annual visit to the NF clinic.  She did great, and for the most part, was cooperative with the doctors.

Sara's MRI we did 10 days ago shows that the tumor in her belly has grown barely at all.  It had "no visible change."  The report does state, however, that the tumor has moved further into her lower spine, and her left hip is almost completely dislocated now.  There is nothing we can really do about her spine, but I'm planning to schedule a consult with her orthopedic oncologist to see what he thinks about the increasing issue with her hip.  At this point Sara doesn't complain of pain, so I don't feel any rush to do anything about it...especially since it would seem that walking isn't in her future.

Everything else went really well!  The doctors seem happy with her progress, and so am I.  We have no plans to do any testing or return to NF clinic for another year!

Saturday, October 1, 2011

The Pumpkin Patch

The calendar says its fall, but I'm not yet convinced.  Its still hoovering around 85 or 90 degrees here almost daily.  We have had a couple glimpses of fall, and if you go up into the mountains its definitely there.  The leaves are turning and its beautiful.  There are a couple leaves beginning to turn on our tree in the front yard, so I'm hoping the weather will follow my tree's shining example soon.

With that said, Sara and did a very fall time activity today and went to the pumpkin patch!  We had a great time, and got some really nice pumpkins.  It was really hot, and dusty, but it was still fun.  Here are some pics of the events of the day!


We started with a chance to "pan for gold."  This was really just buying a bag of "dirt" with "gems" in it (shiny rocks) and playing in the water.  But all the kids had a great time, and that's what's important.


Then we went over and did some rides.  The first was a ride in some blue barrels turned into cars for the kids to ride in, and all pulled by ride-on mowers.  Sara said this was her favorite part, and by the smile on her face I'm a believer! There was also a fenced in track with pedal bikes on them.  Obviously Sara wasn't about to be left out even though she can't pedal the bike, so I pushed her around while she did the steering. 



There was also a place where you could shoot little pumpkins and gourds from slingshots tied to posts!  This was a little tricky for Sara, so I helped out just a little.


We then rode out to the pumpkin patch to actually pick our pumpkins.  On the way we had to go through the cow pasture, so the transport stopped and the kids got to pet and feed the cows.  Sara rode in my mom's lap on the way out and it was nice for them to get a little one on one time.



After picking our pumpkins and getting them back to the cars, we had some time to take some pics and just sit for a few before driving home.  Sara found this garden statue of a plow horse, so she wanted to "ride" it and play cowgirl for a few minutes.

And here they are, the pumpkins!  They're pretty big.  I'm guessing the big one is around 50 lbs or so.  I can barely lift it!  Oh the mess it'll make when we carve it!

It was a good time even though it was almost too hot, especially in the sun!  But the kids had fun, and it was a good way to get in the mood for fall to arrive.  Hopefully it gets here soon!


Monday, September 12, 2011

2011 Denver NF Walk

Yesterday was the 3rd Annual Denver NF Walk!  Sara and I have attended every year, so this was our third time.  The first year it was way too cold (below freezing), and it started to snow heavily half way through.  The next year (last year) it was like 95 degrees and the sun just beat you to death.  It was so icky and hot!  But this year, we finally had pretty good weather.  It was still a little warm (at 85), but the breeze helped a lot.  Third times a charm I guess!

By far I was more involved this year than I have been in the last 2 years.  The last two years Sara and I registered and just showed up to walk, and I did minimal fund raising for the event...around $200 each year.  

But this year I stepped it up big time!  I took the time to register early, made a team (bugging everyone we knew to join us), and by myself raised almost $700 for NF research and support clinics!  We didn't quite hit our team fund raising goal, but we did a great job and I'm so proud of all of them!

Of course we couldn't go and not take pics, so here's the highlights!

Here's the team!  We had matching shirts made, and it was great!



Here we all are walking in the walk.  It was a 1.4 mile walk around the lake in the background.


 Sara got the chance to meet Bernie, the Avalanche mascot after the walk.  There were also a couple players there.  The Avalanche are huge supporters of the The Children's Tumor Foundation, and this event!


Other the last couple years Sara and I have had various members of our family walk with us, but this was the first time we really had a large number of people come out.  It was so amazing to see all our friends and family come out to support Sara, and many others! It was also wonderful to have them meet and talk with Sara and I's larger NF "family".  And it was nice to get the chance to catch up with them myself.

I can't wait to do it again next year!  And just maybe our team will be even bigger!  

And we're still collecting donations for another week or so, please click here to make a donation to Sara's Striders.  No donation is too small!

 

Monday, August 29, 2011

I didn't know what to say!

I have always told Sara that she can do or be anything she wants to be!  And I know that in my heart to be true, and I think that it has empowered my daughter to do some amazing things already.  She's learned to sit up, crawl, and walk with a walker (all things the doctors told me were probably impossible).  She's already learning to read, and she understand other advanced concepts most of her peers don't even know exist in the world yet.

But then this weekend, I finally didn't know what to say.  My daughter told me she wanted to be a fighter pilot when she grows up...and I know that will never happen for her.  But I've spent all this time telling her she can do anything, so how do I now tell her that she will not be able to do that?

It started because there was an air show this weekend at the airport near our house.  The flight path for the runway takes them right over our house, so we got to sit in the yard and watch the planes flying over head.  Sara was completely fascinated by the F-16 fighter jets!  She just thought they were awesome, and that's when she told me when she grew up she wanted to fly them.

It almost brought me to tears to think that I had to tell my little girl that she had finally found something that wasn't an option for her.  So after quickly gathering my thoughts, I told her I thought that would be fun but if she couldn't what else did she want to do.  She said if she couldn't fly jets, then she would still be a doctor.  She told me she wanted to be a doctor so she could help other kids like her a couple months ago, and of course, I encourage that with my whole heart.  I know she can do it.  She's smart enough, kind enough, and understanding enough.  And being in a wheelchair might actually make her better at it.

But it was really hard to look my daughter in the eye and have to consider telling her there was something she couldn't do.  I hope that I didn't say the wrong thing, I hope that she won't realize too soon that there are limits which she is bound to.  She is a free spirit, and I want her to remain so as long as possible.  But she's growing up fast, and all too soon she'll realize that I'm a liar...there are lots of things she will never do!  I hope that day never comes, but I know that some day it will have to.  Please God, don't let it be soon!  I'm not ready to break her heart!


Wednesday, August 17, 2011

Family Pictures

This last weekend we met with some of the family to have some pictures taken.  Mostly it was to get my nephew's newborn photos done, but it was decided that we should also take a new family photo.

So here are some of the photos that were taken.  We took up three different sittings to get them all done, so obviously there are too many to post here.  But of course, I will provide you with my favorites!

Here are the highlights of Sara and myself!




Here are just a couple of the rest of the clan!

Sara and myself, along with my sister, Barb, and her son, Corbin.

 The kids...Brian (my nephew), Alexis (my niece), and Sara (my baby).

The whole clan...Barb, Ed (my stepdad), Alexis, Bonnie (my mom), Corbin, myself, Brian, and Sara.

So there you have it, some of the results of 3 hours of taking photos with 4 crazy kids and way too many adults trying to make decisions!  Its hard not to love family chaos!




Monday, August 8, 2011

Sara's New Best Friend

We went this weekend to meet my nephew, and Sara's cousin, for the first time.  He's a handsome little devil, but I might be a tad biased too.  Sara wasn't so sure at first, and she never did hold him, but she loves being next to him and singing to him.  She told me that she plans for them to be best friends, and she can't wait to show him all her toys so he can play with her.  She also asked my sister if we could take him to the zoo soon cause she wants to show him all the animals.

He's really wiggly for a newborn.  If he's awake, he's flailing his arms around and throwing his head all over.  This made it really hard for Sara to hold him and she decided not to.  But when we put him in his swing for a rest, she was quite the attentive little baby sitter.

Here are some pics that were taken this weekend.  He's a thumb sucker, so it was hard to get pics of him without his hand in or near his mouth.  But I got a couple good ones!




And here's a video I shot of her "taking care of him" while he's in his swing.  The audio is a little hard to hear, but she's singing Row, Row, Row Your Boat to him in the beginning.  Its a little long, being about 1:30, but its a cute one!

video


I can't wait to see them grow up together!  And I hope that Sara is right; I hope they are the best of friends!



Tuesday, August 2, 2011

Announcing....

I'd like to take a moment to introduce my new nephew to the world!  Welcome to the world little man!

Corbin Taylor
AKA Bean





Corbin entered the world on Aug. 1, 2011 at 7:44pm!
He weighs in at 7 lbs. 7 oz. and is 20 in. long!
 


Monday, August 1, 2011

Veggies Anyone?

Our garden has been coming along really well.  We lost some plants in the beginning, but the rest have flourished.  Up until now, we've only gotten one or two strawberries or a handful of green beans.  Not much to brag about.

But this weekend it was time for the first real harvest of our garden!  And here's what we got....


Yes, that's a 12" ruler in the middle.  And yes, that cucumber at the bottom is about 18" long and so big around my hand can't fit all the way around it.  That tomato is almost the size of my fist, and they were all so good!

Its really awesome to be able to walk out to the garden, pick some veggies, bring them in and wash them, and then eat them right then. 

This is just round 1.  There are still about 7 or 8 cucumbers that are ready to be picked (all as big as that one in the middle), and my tomato plants are out of control.  We're just waiting for the fruit to turn red.  I have 4 tomato plants (2 regular, 2 cherry) and they each hold about 12 to 20 tomatoes each!  Guess I'll be making lots of chili and spaghetti sauce.


Friday, July 29, 2011

Got to love a Sara-ism!

Its Friday, and what's better then a good laugh?  I know that I laughed really hard when Sara said this to me earlier this week.

First, a little pre-story.  Sara spent the first part of this week with her dad on vacation.  They went up to Breckenridge, and just enjoyed the small mountain town.  One thing they have there is a gondola ride.

When I asked Sara what they did together when I finally got to see her, she rattles off a couple things and then says with tons of enthusiasm...

"...and we got to go on a granola ride!  And my wheelchair fit inside!" 

Now at first I was confused, so her dad told me what she meant.

So I say, "Oh, you rode on the gondola.  That's really neat!"

And her response...

"Its not a gondola ride Mommy; its a granola ride!  Weren't you listening to me?!?  Maybe you need to put on your listening ears."

 Ah, its it a joy to hear your own words said back to you?!  And in the exact same tone you said them in the first place!?  At least I know she really is listening! 


Thursday, July 28, 2011

Oncology Check-up Summary

Sara had her 6 mos. check with her oncologist yesterday.  But we didn't get to see him, which kind of bummed me out.  The hospital messed up the timing, told me 3:30 but put 2:30 in the computer.  So he had to leave before we got there.  I hate the fact that he left thinking we were late!  But we saw his assistant, Molly, and she reassured me that she would let him know about the mix up.

Molly was great, as she always is.  She gave Sara a once over, checking her heart, lungs, eyes, ears, etc.  She asked Sara about how her leg was feeling, and how school was.  Sara came to this appt. straight from a vacation in Breckenridge with her dad, so Sara had some new things to show off.  One such thing is a new license plate for her wheelchair with her name on it and Breckenridge, CO. 

I'm so glad that Sara is now old enough to express to the doctors what she is feeling.  Before I always had to guess, and its nice to know that she can do it now.  It also makes me happy that because Sara is able to express her opinions and how she's feeling that she can be much more involved in her own care.  Since she's the one who has to go through it, I like the idea that now she can have some kind of say in things.  Molly asked her if she would mind having another MRI soon, and Sara said it was fine...but commented that she doesn't like the mask they put on her face.

The only real things we discussed at Sara's appt. was when her next MRI would be and at what point she needed to attend NF Clinic.  They are making some changes to the NF Clinic, which I'm really excited about.  They are enlarging the program and becoming an NF consortium site.  This means they will be more involved with drug trials and other on going research.  And that means more possible treatment options in the future.  At this point, there is no plan to change any of Sara's current treatments since she's doing so well.  There is also no plans to enroll her in any drug trails for the same reason.

Sara will return to NF clinic in November, most likely.  She will also have her MRI then as well.  I'm not sure what all we will be scanning at that time, but I would like to do a whole body scan if the insurance will allow it.  We haven't done one since she was a year old, and it would just be nice to know that in the last couple years she hasn't developed a new tumor anywhere that we don't know about.  I still need to talk to the doctor about it, so we'll just have to wait and see what he thinks.  As always, as soon as everything is scheduled, I will post it on the right side of the blog so you can all check when it is.




Monday, July 18, 2011

Yea For Healthy Kidneys!

Sara had her annual check-up with her urologist today.  I'm happy to report that her kidneys look as good as ever, and she's doing great!  It was a really quick visit, only about 20 min, which is the fastest visit we've ever had with him.  We actually spent most of the time talking about how great it was that we hadn't been to see him in so long.  Go figure!

The only small hiccup was a small red spot on Sara's leg that she's had for a couple weeks.  Since we were there I asked him about it, and he told me it was ring worm.  Ugh!  So I just have to put some anti-fungal cream on it for a week or so and all will be good.  I haven't caught it yet, so I'm not too worried.  If I was going to get it, I would have since I've been touching it for almost 2 weeks already.  I can't complain too much though; she did manage to avoid catching pink eye from the outbreak at daycare last week!




Thursday, July 14, 2011

A little progress...

After going to bed hungry because she refused to eat her dinner on Tuesday, Sara ate a few bites of dinner last night.  I considered it progress in the right direction, and it reaffirmed that I'm doing the right thing by forcing this issue with her.

For the first time in a while, Sara didn't have a huge fit at dinner.  And she even tried one bite of something new!  She cried a little, and there was still some enforcement of the eating rules about no crying at the table and leaving food she didn't want to eat on her plate...but overall she did much better.

Now part of me wonders if that's not because we had company for dinner.  Sara knows that my rule is that you better have good manners when we have company or are out in public, but you can get away with murder at home when its just us.  Of course, that is one of the things that we're working on. 

I know that her behavior is a direct result of how I parent, so I know that this is not all her fault.  And I know that to change it, I will also have to change how I do things.  I assumed that at first it would be really difficult and I would want to give up, but so far it has been easier than I thought.  Let's just hope that this positive forward movement continues.

Maybe tonight she'll eat all her dinner!  I can hope at least!


Tuesday, July 12, 2011

Help...I need ideas!

I'm calling out to all of my blogging moms (and anyone else who has any ideas) because I don't know what else to do.

Sara has always been a picky eater!  But recently, she's getting even worse.  Things she used to eat she flat out refuses to even allow on her plate now.  Dinner time routinely involves a meltdown, and her refusing to eat. 

I've tried many things to try to get her to eat well and try new foods.  I used to bribe her to try them by withholding dessert till she took at least one bite of something new, but it didn't work.  One of her doctors recommended making rules for the dinner table, so I did.  Rule #1, no crying at the table.  Rule #2, you must leave all the food on your plate.  Rule #3, you don't have to try the new things.  The idea was to put something new on the plate every night, and smaller portions of things I knew she'd eat, and hoping that just having it there and not saying anything about it or making a big deal out of it might encourage her to just try it on her own.  It didn't work either, and I've been doing it for 3 or 4 months now.

So this weekend I reached the end of my rope.  I told her that she was a big girl and she needed to be willing to try new things.  I promised I wouldn't put anything on her plate that I wasn't willing to eat myself, and that I was no longer cooking different things for dinner.  She would eat what I made, or she would go hungry.  I also told her no more snacks, hoping this will prompt her to eat more at the table.  And I also told her on nights she refused to eat or had a tantrum at the table, she would go straight to bed.  The problem is, I know that these new rules aren't the answer, and enforcing them is going to be really difficult and take all my patients.  But I don't know what else to do.

Anyone got anything that might help?  I'm desprate!


Thursday, June 16, 2011

Walking with a Purpose

Today I signed Sara and I up to do the 3rd Annual Denver NF Walk!  Since this is only the 3rd year Denver has had one, its still a relatively unknown event except in the NF community.  Sara and I have walked both previous years, so I'm proud to say we've walked in every NF Walk Denver has had.

This year I decided to be a little more involved and started a team!  The team is called Sara's Striders, and we are walking in honor of Sara of course.  But even though she is our "honorary" member, she is not the only one we walk for.  We will be walking for all those who are effected by NF; it doesn't matter if its the person actually carrying the disease or their family and friends who support them.  All of us are on the same journey, but with different stops along the way!

I have put a link to our team website at the top of the column on the right!  Please support us however you can.  If that means joining the team to walk and help raise money, great!  If you can donate money, great!  And if all you can do is link this information and event to your blog, Facebook, Twitter, or some other means to help spread the word even further, then that's great too!  Spreading the word to as many people as possible is the first step, the rest will follow.

Thank you to all of you that are helping Sara and I reach our fund raising goal!  We couldn't do it without you!

"Individually, we are one drop.  Together, we are an ocean." ~Ryunosuke Satoro


Monday, June 13, 2011

Simply Life

I know I've been out of touch for a while, but that doesn't mean there isn't anything going on.  Usually it means that there's tons going on and I'm just too busy to blog about it.  So here's a really quick catch up as to all that's been happening lately.

Sara got a new walker since her old one was too small for her!  She was super excited to get a new one, till it turned out not to be red.  Her first walker was red.  Totally melt down over color!  Oh well, at 4 years old color is the only thing that matters.  Who cares about size and functionality right?  She refusied to use it for the first week or so (because of its color, a really nice aqua marine), but now she's doing better with it since she realizes the color isn't going to change.  We're also looking forward to getting her new shoes in a couple weeks.

Here's a pic I took when they brought it.  The size difference between her old one and this new one is amazing!  My baby is getting so big!  And yes she's really mad about the color, which is why she's crying.


On another note, our garden died out for the most part with all the hot to cold, and rainy weather we had.  So a few weeks ago I gave in to mother nature and went to the store and bought replacement plants.  And over the last couple weeks, the plants are doing great!  Sara is really excited, especially since we are starting to see some of the veggies growing on a couple of the plants.  Another few weeks and we will be picking some really nice things I hope.

Sara and I also had a roommate move in!  My best friend Kim, who also has a blog, came to live with us this summer after graduating from Columbia University last month.  Sara and I are both really excited to have her with us (even if she is leaving us for 7 weeks to work in Boston at a summer camp).  I know that this is a great arrangement for everyone, and it will be amazing!  Kim has lived with us once before for a couple of months, and it worked out wonderfully.  Its nice to have another person around to help out around the house, and it makes quick trips to the store so much easier cause it can actually be a quick trip to the store since Sara doesn't have to be dragged along.  And once in a while, I'm hoping to even get an extra date night in if she's willing to babysit.  You can't fault me for trying!

Other then that, life is going on as usual.  Sara is enjoying her time at daycare, and they've started Splash Day now on Wednesdays, so that's a huge deal.  Who knew taking your swimsuit to school was so exciting!  And we're both looking forward to the release of Cars 2.  I'm constantly reminded that I promised to take her to see it.  So we will do that when it comes out in a couple weeks.  And we just love the warmer weather, so we play outside and eat on the patio and just seem to have more down time in general once we get home on the week nights.  Got to love longer days!

Hope you are all doing well, and enjoying life!  Until next time....

Tuesday, May 24, 2011

It's the 24th!!


She made it!!!!

Today marks a new record for my baby; its been a whole year without her having to be in the hospital!

Thank you Lord for this blessing that you have bestowed on her.  I am forever grateful!

Hopefully the record will continue to grow and next year we will be celebrating 2 years infection and hospital free!

P.S.  I moved the ticker to the right side of the blog, and it will keep counting there for as long as she remains infection free!

Friday, May 20, 2011

Not again....

I have a good friend with a son just a month younger than Sara.  Like me, she's a single mom.  Her son was diagnosed with Cystic Fibrosis last year at about this time.  I remember how hard that was for her.  Her son was sick all the time, and it took months to get to a diagnosis.  I walked with her every step of the way having already walked the road trying to diagnose Sara's NF.  And when they finally diagnosed him, Sara and I flew to be with them in MN for a weekend.  We just did normal vacation like stuff.  We took the kids to the zoo, to the park, and other places.  I blogged about it at the time, and you can read that post here.  So far his CF has not been an issue for him, and I pray that it remains so for as long as God will allow it.

Recently her son has been having more problems.  He's been having heavy bleeding from his nose, several times a day.  He wakes up in the middle of the night covered in blood.  Its been really hard and so far no doctor has given her any piece of mind as to what might be causing it.  Today she took him to yet another doctor, and this doctor said that dreaded word no parent wants to hear.....cancer!!  She is going to test Jack for Leukemia!

Instantly when I read this on the screen (we're IMing) my emotions well up.  I have to fight back tears.  It reminds me of the day the doctors said that to me.  Sara might have cancer!  It was when we were still searching for a diagnosis.  How could my baby (Sara was only 6 mos. at the time) have cancer?!?  It was one of the scariest moments of my life.  I sobbed in that doctors office not knowing what else to do.  I slept on the floor of Sara's room (not ever really sleeping) just to make sure that she didn't stop breathing or change color.  I struggled to leave her side just to do simple things like shower because I was terrified something would happen until the results came back saying that it wasn't cancer.  And now as I read those words, it all comes flooding back.  The pain, the fear, the anger!  How can this happen again?  And to a child that I would take as my own if something were to happen to my friend!! It makes me want to leave work this instant and go get my daughter, hold her close to me and not ever let go!  I thank God every day that Sara is doing so well, and by Sara standards she is healthy! 

There are no words to ease her fear, and knowing that I've lived it probably won't help her either.  And of course there is always the dreaded waiting game, which is the part going on now.  Waiting for those blood results, that piece of paper that can forever change both their lives.  I just wish there was something I could do.  Some magical words or something I could do.  But that isn't how it works!  No one had those words for me because they don't exist, and it will be the same for her.  All I can hope for now is that God will provide her the strength she needs to get through this.  She is a strong woman, she's survived so much!  And when she finally knows what it is I can do for her to help ease her burden, I will be here waiting.

Tuesday, May 17, 2011

Counting the days...

Sara will be infection (and hospitalization) free for a whole year on May 24th!  That will be a new record, and I'm very excited each and every day that Sara remains healthy.  So excited in fact, that you can see I've added a ticker at the top of the blog to track the number of days Sara has been infection free.

Sara's infections used to dictate everything in our lives.  For 14 months Sara and I lived in the hospital for multiple days (sometimes weeks) of each month.  Life was crazy, and it was hard to think or deal with anything but Sara's failing health.  Finally the tide turned after her urostomy surgery on May 27, 2009.  Since then Sara has only had one infection, which occurred just a few days shy of her 1 year anniversary of her discharge from the hospital after her surgery.

One year will be the new record for Sara, and then each day after that will be a new record again.  She's done so much in the last year, and grown so fast.  Its amazing what being healthy will do!  Hopefully all those infections and hospital stays are behind us for good.

Monday, May 16, 2011

Weekend Nightmares!

So it has been raining off and on here all week long.  We got loads of rain on Sunday and Monday, about 2.5".  For Colorado, that's a lot.  It took us from 40% to 95% of our totally winter precipitation...in just 2 days!  Then it rained again all day on Wednesday...and that's when I smelled it.

There was this horrible smell coming out of the vents every time the heater came on.  I went and checked the filter, and it was pretty dirty...apparently its been a while since I changed it last, oops.  So thinking that was probably what was causing the smell I just used the heater as little as possible, which wasn't too hard since it was nice and warm on Thursday and Friday.  Then Saturday when I went to the store, I bought a new filter.

Saturday it was colder and raining again, so I turned the heater on as soon as the new filter was in.  But a couple hours later, and it still had this horrible smell...kind of like something had died and was rotting in the vents.  At this point, I called my boyfriend to ask him what I should do. 

He says he wants to come over anyway cause he's planning to build a better cover for our plants since its going to be cold and rainy off and on all week.  Once he gets there we start wandering around in my basement to see if it really has nothing to do with my heater like I thought since he can't find a problem.  We go into the spare bedroom and walk over to the far side, and his foot sinks into the carpet and makes this horrible squishing sound.  What the hell?!?!?!  Where is that coming from??? 

Immediately we check the bathroom, and its all good...no leaks.  So since the water is against a wall, we go to the other side of the wall, which is my storage space, and there we find a HUGE puddle.  There's so much water that when you step into the room your foot is surrounded by water and it splashes up on your pants like a puddle!  All the stuff on the floor is soaked as well, not good.  So immediately we unload the room and see if we can find where the water is coming from.  The main water supply to the house comes in here, so we assume its leaking...but its not.  With no idea where it started, its hard to figure out where its coming from.  At that point we just decide to start cleaning up the water and see if that helps us figure out where its coming from and if its even still leaking.

Three hours later, the carpet is damp instead of like a swimming pool...and its 10pm.  I finally get Sara to bed, she's been watching a moving laying in my bed the whole time we're cleaning up the water, and after placing a fan to dry the carpet a little more I go to bed too.  And when I go check on it in the morning, what do I find??  Another puddle!  But this one is smaller, so I have a better idea where the water is coming from.

At this point, I'm way out of my league.  I call my step-dad, and an hour later he shows up and next thing I know he's ripping out carpet and a piece of the wall.  But he finds the leak...and it isn't dripping, its a full on waterfall coming down the wall!!  The water is leaking in around the main water pipe because the foundation is crumbled away.  Not good!!  Here's a pic of the section of wall we had to take out...and all the carpet is gone now too just leaving a cement floor.  You can almost see the waterfall if you look really closely!  (And I took this with my phone, so sorry the pic isn't better.)


I call my boyfriend and ask him if he has some kind of cement mix or something else to seal this with...and ideas would be helpful at this point cause we didn't have any good ones.  He tells me he has a couple things that might work, and he'll gather up some things and be over in a few.  We he gets there, the "boys" start talking about the best way to plug this hole.  After a couple failed attempts, they come up with a plan they think will work...but of course, it means a run to Home Depot. 

I grab the kids, load them in the car, and off we go while the "boys" stay behind and try to keep any more water from coming in.  I get the stuff they want thanks to a very nice man at the store, and get back as quickly as I can.  They jam some plumber's putty around the pipe to slow the water coming in so that the patch has a chance to stick.  It takes a couple tries, but they finally manage to get the water to stop and the patch to stay in place!  My heroes!!!!! 

After the water has stopped, we head back upstairs and I make the kids go play (they've been watching a movie this whole time so that they were out of the way) and put the NASCAR race on while we wait to see if the patch continues to hold.  We check on it a while later, and its still holding tight...and drying!  Thank you God!  After that, we all pitch in to clean up wall and carpet debris and gather up tools.  And once they're both gone, I go back down and do my best to suck up as much water out of the remaining carpet as possible. 

I checked on it again this morning, and its still holding.  The plan at this point is to wait till it dries out, which will take a while since its still raining every other day and cement takes forever to really dry anyway, and then put tar over the top of the patch to really make sure it is water tight.  Then we'll patch the wall back together, but the cement floor will stay.  I have no plans to reinstall carpet in that room...mostly because its a storage space and doesn't need it.

My house still smells, but hopefully once the carpet dries out that will go away too!  It will just take some time since its so wet and humid here.  At this point though, that seems like such a small thing.  But hopefully the worst is over and now its just finishing up the clean up and watching to make sure nothing develops mold while I wait for it all to dry out over the next couple weeks. 

So that was my crazy weekend!  I hope that all of you had a much better one than me.