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 3rd grade, Olivia starting 1st 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!
I thought I’d take this post to share a bit on the CF part of our lives for just a bit. Oh no, here she goes again! There have been a few changes in Julia’s regiment that I’d like to share. Julia is absolutely fantastic! At her last CF clinic appointment, her doctor felt we should add a few things to her care to keep her on the right track. One thing that was added was what was referred to as “cronic” Azithromycin. Julia has taken Azithromycin before, but just for a five day run when she has a little cough. This time, she will be taking it on Monday, Wednesday, and Friday, indefinitely. This is no big deal because I just add another pill to the bunch that she swallows in the morning. We made this change because Julia has been doing this throat clearing and” lugy hawking” thing, for lack of a better term, which made her doctor think she may have more mucus present in her lungs. This drug is also nice because it reduces inflammation in the lungs which is what causes the permanent damage, so we feel this is added benefit. The nice thing is that this antibiotic has not caused Julia to develop c. diff., so all is well with her little tummy.
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.
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.
As life’s pace continues to accelerate, my blog posts are becoming few and far between. I felt that I should get a post up to let you know that we are still here, living life. Nothing too eventful or exciting is happening, which is a good thing for us.
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.
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
Julia's first day of four-year-old preschool
Julia is now going to Morningside. Granite School District preschool rocks...they have a nurse that writes health plans for kiddos that need it.
September has been quite the month of change for our little family. School has now begun for all three Mills kids and the chill of fall can be felt in the air both morning and evening. I am settling into my new job nicely, but still finding it a challenge to keep a balance. The main thing that has taken a back seat lately is my own personal health and fitness. I’ve found that working as a part-time teacher doesn’t actually mean that I work part time hours. I have been staying up ’til midnight at times getting things ready for lessons and centers. Naturally, this poses a problem to maintain my early morning gym schedule. So, let’s just say…I’m falling out of shape. It really amazes me how long and hard you have to work to be fit and how, in a matter of a few weeks, it’s just gone. For me, working out is my Prozac. I have found that it’s the best way for me to keep my sanity.
Naturally when I got a phone call from the CF clinic nurse at Primary Children’s, asking me to fill in as a runner in the Utah Marathon Relay to benefit cystic fibrosis, there was no way I could say no. I really needed my Prozac.
Many familiar faces were at the relay. Julia’s doctor was there, the head nurse (AKA the lady that does the throat tickle) with her husband, and our favorite nurse that checks Julia’s weight and blood pressure…all were there. I thought this was amazing and here’s why…these people spend their entire week on the front lines battling CF and how do they choose to spend their Saturday? Yes, even on the weekend they are working hard to fight cystic fibrosis. Wow, that touches my heart. These are the people Julia has on her team. She’s such a lucky girl.
I ran a very hard 5.2 miles…hard because I’m out of shape and hard because I was trying to go as fast as I could without passing out. I was the slow poke on the team. Everyone else could do 8 minute miles and I do 10 minute miles when I’m in shape and I’m not. I pushed myself to go as fast as I could. I did my leg in around 54 minutes and Team InCourage, the makers of RespirTech (Julia’s vest) placed 18th out of 63 teams. Not too shabby.
I cried much of way home. I cried because I needed to. I find that I’m numb most times. I purposely numb myself to what CF really is and what it really means. But, there are times when the reality of it hurts. It’s real when you see a sign pinned to a runner’s back in memory of a friend who passed away recently because of CF. It’s real when a three-year-old doesn’t have his mom anymore because of CF. I choose not to dwell on that side of CF for very long, but there are times when I’m confronted with it, face it, and move on, continuing the good fight.
It was a good weekend. I feel rejuvenated and ready to face anything that comes my way.
Team InCourage
This has been a week full of firsts for our family. Here are some pictures that capture this week:
First day of school!
Olivia is now a big 1st grader...all day school for her!
Austin is now in the third grade. He is so big now. His head is up to my chin, he's wearing 12 regular size Old Navy jeans, and his shoe is a size 6...he's only 8 years old!
First football game/scrimmage.
I have found this whole football experience to be quite fascinating. Austin just loves it! He works so hard and is drenched in sweat during every practice and game. Austin is an X man on his team and he’s the only X man on his team. I’d like to explain the whole X thing for people like myself who are new to all of this. All the players are weighed in during this huge session. This weigh-in is serious business. Parents and coaches aren’t allowed in the weighing area. Many players show up in socks and very light weight shorts and t-shirts. Those players weighing more than 76 pounds are Xed, meaning they aren’t allowed to run with the ball. I guess it’s a safety issue…they don’t want the bigger players to plow down the little guys…running down the field for a touchdown like a bulldozer with players flying everywhere.
What is fascinating (OK, so I really mean disturbing) is how parents handle the whole X issue. Many parents go to great lengths to make sure their kid isn’t Xed. I’ve heard rumor of parents putting their kid on a diet, starving them, etc. to make sure they don’t go over that 76 pound mark. My Austin is a big kid. He’s been in the upper 90th percentile since birth. He’s tall and solid and 83 pounds and…he’s an X man! I am so proud! He has had kids on his team tell him that it’s too bad he’s an X man or that it stinks to be an X man. Shame on their parents! There is nothing wrong with being who you are, the size you are, and it’s sick to put kids on a diet unless they are obese and it is prescribed by a doctor.
Jumping off my soap box now…Austin plays center…he gets to hike the ball (for those of you who are football illiterate like myself). He also plays a guard on defense. He loves it and it’s so exciting to find something that he enjoys that gives him a good butt kicking.
So proud of my X man.
Drenched in sweat
On another note Julia and I also got to meet with her new preschool teacher for the first time. It was a good meeting, giving Miss Erin the run down on CF. Julia will be at Morningside this school year…much closer to home. We are excited for another great school year. Once again, my kids have been blessed with some pretty amazing teachers.
This morning all three kids and I headed up to Primary Children’s for Julia’s CF clinic appointment. This is a bit different because I usually don’t take all of the kids. I make most of Julia’s appointments when Austin and Olivia are in school, so today, we packed a huge bag of ”things to do” and headed out the door. These clinic appointments are usually two hours long and that’s pretty standard. Today was no exception. This appointment was a bit different in that Julia was due for her yearly chest x-ray and labs.
The chest x-ray is no big deal. The labs…require a blood draw, so that thing that kids dread most about doctor visits, the needle, comes out of hiding. It has always been my practice to warn my kids well in advance that a poke is in store, but this time I hesitated. Julia had such a terrible experience a year ago when she had her clean-out. She was poked around ten times over the course of a few days and she resorted to hiding in her hospital room whenever a nurse, or anyone entered.
I mentioned yesterday to Julia that she had clinic in the morning.
“Am I going to get a shot?”
“Yes.”
“Am I going to get a throat tickle?” (culture)
“Yes.”
“Do I get to get to blow up the balloon?” (PFTs)
“Yes.”
“Do I get to go to the cafeteria to get a treat?”
“Of course! That’s the best part.”
“OK.”
And that was that.
I did, however, expect for her to put up a fuss about it when we got down to business, but not a peep…not a tear…nothing eventful. She just sat nicely on my lap, held her blanket close, buried her head in her blanket, and it was magic. I did tell the phlebotomist to draw from her wrist and she struck gold the first poke. Julia’s elbow bends tend to be nightmarish when it comes to blood draws and I didn’t want to witness another “digging for gold” scenario and Julia probably didn’t care to experience that.
Julia's prize for blowing like a champ...FEV1 115...wow that's all I can say!
Julia's chest x-ray...looks very nice...I only see a small spot or two.
This is not Julia's chest x-ray, but that of a CF patient that is a bit further along in the progression of this nasty disease.
And of course our visit to PCMC wouldn't be complete with out saying, "Hello" to Skittles.
I’ll keep you all updated on culture results. Julia is looking very good. She didn’t gain much weight this summer, but she is growing taller and has been very active. Julia starts TOBI tomorrow, so together we’ll devote two hours a day to kicking some major CF booty!
I’ll leave you all with some pics of the kids participating in some Pioneer Day activities.
Julia and Olivia waiting to walk in the parade.
Austin waiting for the parade to begin.
Fun horsey ride!
Handcart ride
Austin gives his friend a ride.
My girls’ birthdays are two days apart, so to save a little we do a joint birthday party. It has been really nice and I will continue to do this for as long as I can get away with it. Last year, my son Austin had his party at GTC (Gymnastics Training Center) and the kids loved it, mostly boys by the way. This year my girls wanted to do the same, and once again, GTC didn’t disappoint. All the kids had a sweaty good time! Parties at GTC are two hours of kid paradise. The kids get full run of the gym and they pretty much get to do anything they want to as long as they are playing safe. Some of the adults can’t help themselves but to join in the fun. Just climbing out of the foam pit is enough exercise for an entire week. Here are a few pictures of the fun we had last night. Olivia is now six and tomorrow Julia will be turning four. I can’t even believe it!
Olivia-my big six-year-old
Olivia hangs from the bar.
Julia-my big four-year-old
Austin on the rings
Fun with foam blocks
Austin can't wait to dig into his monster truck cake.
Julia is drenched in sweat after her party.
Olivia, all smiles-I think now she'll stop asking me, "Is it time for the party to start yet?"
On to the madness part. Since Austin’s second birthday, I’ve been making creative cakes for my kids on their birthday. Well, I have gotten myself into trouble because each year I feel like I have to outdo myself. This year was no exception. My great idea this year was to make mini cakes for the guests to take home as a party favor. Such a brilliant idea, but oh what a pain. I spent one whole day baking the cakes and about a day and a half decorating. My mom and my sister had to come over to help me because the project was so huge. In the end, we ended up with two big Barbie cakes for the birthday girls, ten mini Barbie cakes for the girl guests, and six Monster Truck cakes for the boy guests. The kids loved them! They all turned out so cute and secretly I enjoyed the challenge. My only fear is what I’ll have to do next year…
Julia's cake was a yellow/chocolate cake with butter cream cheese frosting and fondant outer covering.
Olivia's cake was a chocolate cake with butter cream cheese frosting.
Mini cakes-the truck cakes are chocolate frosting with Oreo cookie crumbs for the dirt and the Barbie cakes are a variety of frosting and fondant. The kids loved them!
Julia blows out her candles with a little help from a friend.
Olivia enjoys her birthday song.
The best birthday present of all...a brand new PINK vest!
Happy birthday Olivia and Julia!
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