Gardening CF style

She's such a good sport.

I’m not sure exactly where I’m going with this post, but I feel a strong need to get some words out.  Julia is one smart little cookie and she is getting to the point in her life where she knows things.  One thing she is realizing is that she’s just like all the other kids in most regards, but there are things about her that make her just a bit different.  Julia has cystic fibrosis…she knows it…we all know it.  But, Julia has decided that she doesn’t want to have CF anymore.  As a parent…what are you supposed to do with that one?

Treatments are beginning to get a bit more challenging.  Julia doesn’t want to do treatments.  If you saw your big brother and big sister never doing any treatments, would you want to do them?  I sure wouldn’t.  I find myself saying, “It doesn’t matter if you want to do them or not.”  As well as, “Do you want to do this the easy way or the hard way?”  Julia knows that treatments are going to happen no matter what, but I don’t think that’s going to stop her from trying to be just like everyone else.

I explained to Julia that scientists are trying to develop a pill for people with CF so they won’t have to do so many treatments.  Julia keeps asking me when the pill will be ready so that she won’t have to do lots of treatments.  I wish I had an answer for her.  That breaks my heart.

Please join us on May 19th for the Great Strides walk to benefit cystic fibrosis.  I think now, more than ever, we need a pill…a cure so Julia and all people with CF won’t have to do so many treatments.  Go to www.cff.org/Great_Strides/JannaMills and donate today!

We had a week off for spring break and it should have been a week of rest, but I had many painting projects planned for the week. The first project…fireplace face lift.

Before

My little "helpers"

After

Second painting project…bathroom facelift.

My "helpers" hard at work again...before...gray/blue color...I mean, what goes with bright blue tile and a salmon/pink colored sink and tub?

Melted Butter Yellow of course!

I just love how warm it feels!

To try to combat all of the fighting over the ballerina towel (Austin not included), I hung individual towel hooks for each child and made them a special hooded towel. So far so good! I just need to get their names put up over their hook.

And after all of our hard work, Easter Sunday fun!

Julia, Austin, and Olivia...thanks Grandma Kamper for the wonderful outfits!

Three happy kids on Easter morning!

Even a big nine-year-old likes to hunt for eggs.

Run Olivia!

Go Julia!

April has been a busy month.  Austin has started baseball.  Julia and Olivia have started gymnastics.  Joe has started softball.  Me…I haven’t started anything, but I’m getting geared up to start back up at Westminster next month to finish my master’s degree.  I’m wrapping up a school year and planning a baby shower for my sister.

I also want you all to join us at Great Strides this year.  It is on Saturday, May 19th at 9:00 AM at the Energy Solutions Arena.  Let me know if you want to join our team.  Please visit www.cff.org/Great_Strides/JannaMills for more information.  We’d love to see some more people come out and support Julia’s Warriors.

Enjoy this year’s Great Strides video!

Click here to view the embedded video.

Over the last two months, Julia’s teeth had been changing color.  After Christmas break, I noticed that the cracks and crevices on  her molars were black, not gray, not yellow, but black.  Then, slowly, over the past two months, the fronts of her teeth were turning gray and darkening.  I thought for sure that Julia’s beautiful little smile was ruined.  I had this image in my head of my beautiful, little Julia with shiny, capped teeth.

So Julia started brushing more and flossing better, but her teeth were looking worse each and every day.  I thought that possibly some of the medication she nebulizes may have been getting the best of her princess smile.  I finally had enough and took her into the dentist.  I just couldn’t wait until May for her six-month check-up.

After giving the dentist the rundown on Julia and all her medications, vitamins, supplements, etc., he said the following:

“Any medical treatments or medications that maintain Julia’s health come as a priority over Julia’s dental health.”

Okay, not exactly what I wanted to hear, but I get that.

He continued,

“I’ve seen this staining before and most of the time it is caused by iron supplements that coat the teeth.”

Ah, ha!  Makes sense.  Julia’s last blood test showed that she was a little low on iron.  To combat this, she was put on a children’s chew-able vitamin supplement that included iron.

And the best part,

“We can use a high abrasive tooth paste and scour the teeth to remove the staining.”

Best news of my day!

I said, “I don’t care what you have to do, she needs a beautiful smile to match the beautiful person she truly is.”

So after over an hour in the chair, enduring some pretty intensive scrubbing and buffing, Julia’s smile is absolutely beautiful!  Her smile looks like a million bucks.  I can’t tell you how relieved I am.  Of course both the dentist and hygienist were completely amazed at how nicely Julia sat through the entire process.  If they only knew what she has to sit through on a daily basis.

When you see Julia tell her how beautiful her teeth are.  Bye bye witch’s teeth and welcome back princess teeth!

Julia's smile today as she's getting ready to head into preschool.

And just for fun…

Julia's prize for blowing like a champ during her PFT's at her last clinic visit at PCMC.

A visit to PCMC isn't complete without visiting Skittles the horse.

]]> http://www.cfparent.com/witchs-teeth/feed/ 0 http://www.cfparent.com/first-cayston-experience/ http://www.cfparent.com/first-cayston-experience/#comments Sun, 29 Jan 2012 06:43:48 +0000 Janna http://www.cfparent.com/?p=1533 On Thursday, Julia and I went up to Primary Children’s Medical Center for Julia’s first ever Cayston experience.

Rewind just a bit…ever since Julia contracted pseudomonas, a harmful bacteria damaging her lungs, she has been on a medicine called TOBI.  TOBI is an inhaled antibiotic that treats pseudomonas and keeps it under control.  The only down side to TOBI is that it takes a loooong time to inhale, 30 minutes to be exact, which adds an additional hour onto Julia’s already hectic treatment schedule.  Cayston does the same thing as TOBI.  It is an inhaled antibiotic that treats pseudomonas just like TOBI.  The truly fantastic thing about Cayston is…it only takes two minutes to neb.  I originally said it took three minutes, but I lied.  After timing it we found that it was two minutes exactly.  TWO MINUTES!  I am still in shock at how fast it nebs.  It is A-MAZ-ING!  Even Julia is surprised at how fast it goes.

Julia is the youngest patient at the Intermountain Cystic Fibrosis center to be on Cayston.  She is one amazing four-year-old!  I am so excited for her as we are taking back an hour of our day and loving every extra minute of it!  Just in case you don’t believe me, we made a little video of Julia inhaling Cayston.  It makes her cough a little, but she puts up with it for two minutes.  She is such a trooper.

Click here to view the embedded video.

Julia with the Peanuts gang after her first Cayston experience at PCMC.

Altera nebulizer system...it can be battery operated and doesn't make a sound besides a beep.

The Altera is so small...it fits in my hand.

Cayston is different from TOBI in that is has to be mixed. It also has to be administered three times a day as opposed to two. Cost for a 28 day supply...$6019.69. And I thought there couldn't be a medicine more expensive than TOBI.

We are so excited about this new change to Julia’s treatments.  We’ll keep you posted on how things go, but so far, we couldn’t be happier.

]]> http://www.cfparent.com/first-cayston-experience/feed/ 0 http://www.cfparent.com/2011-recap/ http://www.cfparent.com/2011-recap/#comments Fri, 13 Jan 2012 17:01:19 +0000 Janna http://www.cfparent.com/?p=1509 For those of you who aren’t on my Christmas Card mailing list, I thought I’d post my card for you here.

Mills’ Family Top 10 of 2011

#10-Joseph playing softball on a team with his brother

#9-Olivia winning a lunch date with her Kindergarten teacher and getting to ride in her teacher’s car and visit her teacher’s house…even better than with a celebrity!

#8-Austin starting 3^rd grade, Olivia starting 1^st grade, and Julia starting another year of preschool…even better than that…three wonderful reports from their teachers at parent/teacher conferences

#7-Janna becoming the newest kindergarten teacher at Calvin Smith Elementary…can we say, “Yay!” for group health insurance!?!

#6-Joseph, Olivia, and Austin’s many ski trips to Snowbird…Utah really does have the greatest snow on earth!

#5-Janna and Joseph celebrating 15 years of marriage!

#4-Olivia and Julia dancing their little hearts out in their spring concert

#3-Austin playing the position of Center for his Gremmie football team and his team placing second in their division

#2-Janna running in and finishing the Salt Lake City Marathon…time to complete:  5 hours, 14 minutes…thus confirming that running really does suck!

#1-Our family vacation to Doheny State Beach, that included Knott’s Berry Farm, Disneyland, Sea World, and Laguna Beach tide pools

Sending our love and best wishes this holiday season!

Love,

Joseph, Janna, Austin, Olivia, & Julia

My beautiful children! They couldn't make this mama more proud!

I hope to get more up on my blog this month after Julia’s next clinic visit.  She will be doing a test run of Cayston this month and if all goes well, she’ll start on January 27th.  Hope all is well!

This is what Julia takes in the morning when she wakes up. The pretty pink one is her new Azithromycin. That's a lot to swallow!

Another addition is adding Hypertonic Saline to her morning treatment.  This is something Julia inhales in the evening already, so we just slip it into her morning treatment as well.  This is to help her clear out any excess mucus that may be building up in her little lungs.  So, this month, Julia inhales five nebulizers of medicine.  It makes for a lot of sanitizing at the end of the day for me, but I do believe that her lungs are saying, “Yay!”

In case you were wondering what five nebulizers look like...Julia is such a champ, and I have the pleasure of sterilizing each and every one of them.

One last change that should be coming very soon is Cayston.  Cayston is a new inhaled antibiotic that is used to treat pseudomonas.  Cayston would replace Julia’s TOBI.  TOBI adds about an hour per day to her breathing treatments.  Cayston would do the same thing as TOBI, but in less time.  Cayston takes about three minutes to inhale, where as TOBI takes about 30 minutes.  This would be huge for Julia.  The only down side to Cayston is that it has to be done three times per day instead of two.  That means we would have to figure out how get in a ‘noonish treatment.  I would also have more clean-up due to the extra equipment for the extra treatment.  If all goes well with her practice run of Cayston up at Primary Children’s, Julia will switch from TOBI to Cayston and be the youngest patient at the Intermountain CF center to be on this drug.  I’ll keep you posted on how it goes, but we are excited about trying something new.

Cayston has a different neb cup and compressor which looks pretty sleek!

That about covers the new developments in our CF world…Julia’s CF world.  We are so fortunate that we have so many wonderful things to treat Julia’s cystic fibrosis.  We are also very optimistic about new developments that are approaching what looks like may be a possible drug that targets the root cause of cystic fibrosis and not just the nasty symptoms.  That would be truly wonderful.  After all, what I really want for Christmas is a cure.

]]> http://www.cfparent.com/all-i-want-for-christmas/feed/ 0 http://www.cfparent.com/black-friday-madness/ http://www.cfparent.com/black-friday-madness/#comments Sat, 26 Nov 2011 17:05:04 +0000 Janna http://www.cfparent.com/?p=1480 Thanksgiving evening, my husband and I went out on a date.  We left a few hours before Black Friday and the title of our date was Operation Lap-top.  We left early before most of the Black Friday sales had started.  For fun, we cruised by Toys-r-us to scope it out.  They were having a sale beginning at 9:00 PM and it was 8:30, so we thought, “Why not?”  We drove by and after seeing the never ending line stretching around the building and well into the parking lot, we kept on driving…not!

Our next stop was Best Buy.  Best Buy was going to have a lap-top that my husband thought would be the best for the money.  We drove through the parking lot and upon seeing the line of tents…I know TENTS…as well as people wrapping around the building and into the parking lot, we again, kept on driving.  It would seem that Operation Lap-top was not going so well.

After a little thought, we decided to swing by Wal-mart and see how things looked there.  We pulled into the parking lot at 8:45ish and thought it was good luck that there were actually parking spaces.  We debated about going in as there seemed to be tons of people going in and no one coming out.  We chose to go in since we were there and parked.  Might as well see what things looked like inside, right?  We went in and it really wasn’t too bad.  There were lots of people there.  We purposely neglected to grab a shopping cart.  I’ve learned through past experience that carts work against your efforts on Black Friday because it it impossible to maneuver a cart in shoulder to shoulder traffic.

We headed straight back to electronics and managed to get a ticket for a lap-top.  The tickets are nice because they guarantee you the item, but the down side to the ticket is that you have to stay in the line designated for that item.  You cannot leave the line, or you forfeit your ticket.  What if you need to go to the bathroom?  Well, you must surrender your ticket and it is returned to you when you get back in your spot in line.  It was only 9:00 PM and I decided to stick it out in a three hour line to get my lap-top.  I know, crazy…stupid…insane…but I really wanted to go home with a lap-top.  Our old lap-top crashed and burned I really wanted to replace it.

My husband at this point had decided to abandon our date and head home to trade places with my sister who was watching the kids for the night.  He wasn’t feeling too well after over-eating on Thanksgiving and wanted to go home to rest.  I was content to stay in line and facebook on my iphone while waiting for the minutes to tick by.  I waited and actually got lucky when the line moved up a little and I could sit on a large treadmill box with a few other holiday shoppers.

I heard back from my husband about 45 minutes later, saying he was on his was back to meet me at Wal-mart.  Apparently he was feeling much better.

Then, something was happening.  Sitting there on the treadmill box at about ten minutes to 10:00 PM, I could hear that something was happening.  A sound started low and then started to grow and grow and grow.  I stood up along with several others in line to see what was happening.  When we stood up, people were everywhere, scrambling around grabbing stuff.  The 10:00 PM sale had started and it wasn’t even 10:00 yet.  I could hear the most activity coming halfway across the store from the meat department where the movies and games were located.  What happened is that some over anxious shoppers started ripping into the sale items early which started a chain reaction that couldn’t be stopped.  The Wal-mart store manager ever got on the intercom and announced to cut the plastic of the 10:00 items early because everyone was going crazy.

I was getting worried about my husband because he was supposed to meet me in line and hadn’t gotten there yet.  He was stuck in the mob of people grabbing things.  About 2o minutes later, he made it back to me in the lap-top line.  He took my spot and I proceeded to venture out into the store to see if I could grab some of the leftover deals.  I lucked out and was able to grab five dollar pajamas, Tupperware, and a few other gifts that were a steal.  With my arms loaded, I took the items back to my husband in line.  I dropped everything off and then grabbed an abandoned cart to keep with my husband in the lap-top line while I went to gather more items.

Another item on my wish list was the $69 dual screen car DVD players.  I wanted one to take on our trip after Christmas.  The life span on these things seems to be about a year for our family, so I in fact wanted two of them.  After much searching, I found where these items were being displayed, but they were wrapped in plastic and a couple of people were standing by them, waiting.  These were part of the midnight sale, so I had to stand and wait with the others for another hour.

As we waited there, a small crowd began to gather.  We all wanted the same thing and wanted to make sure we got ours.  After about 30 minutes of waiting, a relative of a woman waiting came up and told her to just take one.  She refused saying we had to wait until midnight.  He told her to take one.  She said no.  He said, “No one’s looking, how many do you want?”  She said, “Two.”  Then he proceeded to rip open the plastic and take out two.  Then other people started grabbing.  Not wanting to miss out on the deal, I reached in and grabbed two.  Just as I had two in hand, a Wal-mart worker came over and said, “Hey, what are you doing?  Those aren’t on sale until midnight!”  I just walked off back to my husband in line, two dual DVD players in hand.  Redneck Christmas shopping at its finest!

As midnight approached, I waited in the lap-top line with the cart as my husband went out to see what he could find.  About 10 minutes before midnight it happened again.  The sound started low and started to grow.  It was a rustling sound and it got louder, and louder, and louder.  I stood up to see people grabbing all kinds of stuff.  One of the most dangerous items to grab at midnight was the $20 color printer.  People were getting pushed over, scraped, and trampled.  Needless to say the printers were gone in less than a minute.

A few minutes to midnight, the lap-top cart came out, heavily guarded by a bunch of Wal-mart employees.  They pulled the cart to the front of the line and that’s when the chaos began.  A huge mob of people started to rush the front of the lap-top line.  Yes, the line that we had been waiting in for over three hours!  All of us in the lap-top line started to worry that we wouldn’t get what we had been waiting for all night.  After about five minutes of confusion, some arguing with employees, etc., the lap-top line started to move.  One by one, people collected their lap-tops.  The moment finally came and we handed over our ticket for our $250 HP lap-top.  Yay!  Operation Lap-top was a success!

The check-out lines were out of control, so we just walked around Wal-mart a while to see what was left.  We managed to get our hands on some $2 movies for stockings and a few other odds and ends…we even grabbed a couple gallons of milk and some cheese to make the shopping trip complete.

This was my husband’s first Black Friday experience.  Black Friday isn’t for everyone.  I always tell myself every year that I will NEVER do that again, and I always end up out in the crowd, fighting for a deal.

I hope you all had a happy Thanksgiving!  Sending you best wishes from my new HP lap-top!

I took this picture this morning in our living room.  At first glance you may think that it’s time for our family to evacuate.  Is the chimney clogged?  Is there something smoldering in the attic…some hot wires maybe?  Did I perhaps leave a tortilla on the stove for too long?  No…no…and no.  What you are seeing is our living room during Julia’s TOBI nebulizer treatment.  You can see her little foot on the right.  This happens to be a morning treatment.  The sun is streaming through a living room window causing Julia’s inhaled antibiotic to become very visible.  Wow, not only is Julia getting a huge dose of this medicine, but I’m pretty sure anyone in the room is getting a dose of their very own.

So, I have a question for those experienced TOBI users or TOBI givers.  What effects does breathing second-hand TOBI have on non-CFers?  The reason I ask this is because I have had sinus problems ever since Julia started using TOBI.  It could be a strange coincidence because we moved into an older home around the same time, so it could also be that I’m being aggravated by something else in my environment.  I thought I’d throw it out there to see if anyone else has had any issues.

Signing off for now as this week’s Halloween festivities have simply worn this lady out.

Two weekends ago, I participated in the OutRunCF virtual fundraiser for cystic fibrosis.  I simply put on my t-shirt early in the morning, and ran five miles along with a few hundred people all over the United States.  The money raised goes to benefit the Cystic Fibrosis Foundation.  Anything that raises a few dollars for CF and gets me moving is a must do for me.

2FEET.1GOAL.OUTRUNCF.

Nice orange t-shirt...appropriate for an October run.

Another CF mama and I want to organize something where a bunch of moms who have kids with CF get together for an event.  If you are a CF mama and want to join us, let me know.  We could put together a team for something fun that gets us moving together.

On another note, football has been a huge part of our family these past few months.  With Austin’s practice and games consuming four days of our week, we spend a lot of time on the grass.  Austin loves it and it’s teaching him discipline and teamwork.  His team has been on a huge winning streak and they will be going to the playoffs in November.  So exciting!

My handsome X man.

Austin has been playing both offence and defense lately. He gives it his all every game.

Go Eagles!

Switching gears yet again…

If someone would have told me a few years ago that I’d be done having kids, going back to work, and living in an old, rundown house, I’d of laughed.  Life has a way of surprising you.  You never really know what’s around the corner, waiting.  If things would have been according to plan, I’d probably be pregnant with number four or five, getting a pedicure, and going out to lunch with a bunch of girlfriends.  Sounds like bliss, right?

Instead, I haven’t had professional pedicure in years (mine are all home done these days), my stretch-marked, baggy stomach will never again be filled up with baby, and instead of heading to lunch with the girls, I head into a classroom to face 21 five-year-olds.  This may sound like I’m complaining, but actually I marvel at how life runs a course…not my course, but one of its own.

Cystic fibrosis was not part of my plan…a crash in the real estate market was not part of my plan…being a working mom was not part of my plan…but right now, I wouldn’t have it any other way.  It’s Plan B.  We always try to have a Plan B lined up, just in case, and it’s the best Plan B for our family at this very moment.

I have three fantastic, healthy children, a husband who works hard and is very supportive, and my health and sanity.  Life is imperfectly perfect.

My beautiful Julia and CF warrior princess-age 4

Stunning Olivia-age 6

My little man Austin-age 9

It doesn’t get any better than this.

]]> http://www.cfparent.com/outruncf-and-more/feed/ 0 http://www.cfparent.com/all-austin/ http://www.cfparent.com/all-austin/#comments Sun, 25 Sep 2011 14:41:51 +0000 Janna http://www.cfparent.com/?p=1427 This blog post is all on Austin.  Austin will be turning nine on Wednesday, so this weekend was dedicated to him.  Austin had a football game Saturday morning.  The game was very intense and his team pulled off a win in overtime.  The last play consisted of a one yard running play where the team made a wall and pushed through.  My husband and Olivia got a kick out of Austin and his classmate doing a chest bump to celebrate their win.  It was a great way to start a Saturday.

We had a birthday party for Austin in the afternoon with a few of his closest friends.  It was a busy, but fun Saturday.

Austin is growing up so fast.  He is up to my chin these days and his hands and feet are almost as big as mine.  Wow!  Austin is such a great kid…very mellow and easy going.  We are so happy that he is a part of our family.

Austin is becoming quite the player on his football team. He goes up against these big, heavy kids and really gives them a challenge. Here he is playing center, holding a kid much heavier and taller than he is.

Austin protecting his quarterback.

Mills ready to hike the ball

I love this pic...my sister's camera is the best!

Austin-Septermber 2011

Big brother

Austin's birthday cake

Party time at the park

Time for presents

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