Friday we had a fun summer dinner with people from our church and people in the neighborhood. It was filled with great activities for the kids. The girls enjoyed riding the horses that were brought in by a very generous neighbor. There was a huge water slide that my kids drooled over because I didn’t bring towels or bathing suits, but they did get to throw the ball at the dunking booth and get their friends wet.
Austin waited in line for an hour to do the zip-line, which gave me much anxiety. I was waiting for it to break at any moment and send some poor child plummeting to the ground. Luckily, it held up. It was very high up in the air and very long, extending at least a football field in length, maybe a bit more. Anyway, great fun for a Friday night. We have such a great neighborhood here. I can’t believe that it will be a year next month since we’ve been here. We love it!
Julia and Dad on "the white one." Julia always wanted "the white one."
Olivia and Dad going for a ride
My girls and baby Crew
Austin braves the zip-line
Tuesday night we got some free tickets to see the Wiggles. It was a live show and Julia just loved it! She has always liked the Wiggles and they have helped us get through some pretty long treatments, so it was a treat for her to see them in person. She cried all the way home wanting to see the Wiggles again.
We're about to see the Wiggles!
Julia can't get enough.
They even drove their big red car on stage.
Julia wore these goggles all day yesterday. They even stayed on for her nap.
Austin at the park...can you tell it's hot and humid?
Such a good boy...anyone want to dog sit for us next week?
Olivia enjoying the park in the heat. Notice Julia in the background...yes the goggles are still on.
Julia leaving clinic at PCMC...nothing like a piece of your heart walking around outside your body.
Today was Julia’s CF clinic appointment. Every three months Julia has an appointment up at Primary Children’s Medical Center. These appointments help us give Julia the best care we possibly can. We had a great visit today! Julia has gained over three pounds in the last few months and has grown a few inches as well. She is tall and lean and completely average. This is great news! It’s easier for a CFer to stay healthy with a little meat on their bones.
Today was different because Julia is now old enough to stand on the big kid scale and be measured on the wall with the big kid ruler. She really hated the baby scale and the thing she had to lay down on to get her height.
We are also going to start practicing using a mouth piece for a few minutes during treatment time. A mouth piece is much more effective than a mask in delivering the inhaled medicines to her lungs. So, we will start using a nose plugger and working her slowly into using a mouth piece.
The disappointing news is that a clean-out is lingering in Julia’s very near future. We will be awaiting culture test results this week and will need to make some decisions based on what grows in her culture. For those who don’t know what a clean-out is…it’s a hospital stay that includes a PICC line placement and the use of very strong intravenous antibiotics. A PICC line administers the medicine right to the heart, so it’s pumped through the blood stream to her entire body.
Why would we need to do this? Julia has been growing a certain bacteria in her lungs, pseudomonas, that is known to cause damage and lower lung function. She has also slowly but surely acquired a cough, appearing during evening treatment sessions, that was never present before pseudomonas took up residence in her lungs. The hope is that with strong IV antibiotics, this bug could be cleared from her lungs, or at least get a good arse kicking and keep it in check for a while.
We won’t be making any decisions yet…waiting for a little more information and some test results. This is something that comes along with this horrible disease. Julia looks perfect on the outside, but every day, every minute there’s a battle going on inside her little body. It’s astonishing what this three year old has to do each day just to be able to breathe…something we all take for granted.
I’m a bit of a mess right now as it takes me an adjustment period when we get new things added onto the dinner plate of Julia’s care. I hate this. I hate CF. We’re just gearing up to fight the good fight and give pseudomonas a beating like no other.
Here are a few pictures from Julia and Olivia’s birthday celebration. It was such a fantastic day and all the kids had such a great time! We are so glad that so many could be there with us to celebrate for two very special girls.
Julia's monkey cake...because she's such a little monkey!
Olivia's mermaid cake...the frosting wanted to just slide down the cake.
Birthday sisters
Kids ready to swim
Present time!
Such a beauty!
Big brother Austin
Mermaid costumes made by Aunt Elisa
Julia-one year old
Julia today-she's now three!
My kids ready for church
Julia's birthday present...she loves guitars! Yeah, I know it's upside down...she'll get it someday!
Today is Julia’s third birthday. Time goes by way too fast!
Here are ten things I like about Julia:
1. Julia has the greatest belly laugh.
2. Julia is very patient.
3. Julia loves animals.
4. Julia can dance her heart out.
5. Julia likes to wear dresses and look pretty.
6. Julia loves to “help” me.
7. Julia has a good sense of humor.
8. Julia is smart.
9. Julia has a big heart and is full of love.
10. Julia is brave and very strong.
We love you Julia!
Today is Olivia’s 5th birthday! I can’t believe that she’s already five. Where did the time go?
Ten things I like about Olivia:
1. Olivia is the best big sister a little sister could ever have.
2. Olivia has some sweet dance moves.
3. Olivia is super creative.
4. Olivia has a unique boice, oops, I mean voice.
5. Olivia is kind and gentle to our pets.
6. Olivia is a good student.
7. Olivia loves to shop.
8. Olivia always makes notes and presents for family members.
9. Olivia is always ready to pose for a photo.
10. Olivia adds flavor to our family.
We love you Olivia!
Olivia-age 2
Olivia is now 5!
Birthday Princess
Even Snow White has to do treatments!
The girls were invited to a princess birthday party today, however one princess couldn’t leave before getting her treatment done. Julia was so excited about dressing up that she couldn’t wait to put the dress on until after her vest portion of treatment. So, Snow White got her treatment done this morning and off to the ball she went.
I must say that this party was one of the best I’ve ever been to. It was so special because a cute little girl named Ashley turned six today and she invited Olivia and Julia to celebrate with her at La Caille. What a beautiful setting for a princess party. The restaurant is just like a castle and the grounds are like paradise. We all had a fantastic time celebrating, seeing cute little bunnies eating grass, peacocks, swans, ducks, and flowers galore. Happy birthday Ashley! We love you.
Ashley, Julia, & Olivia @ La Caille
The hill where the bunnies graze
Julia feeds the swans.
Cinderella at the ball.
Beautiful peacock
My husband's best friend
This is a blog that my husband should be writing, but I am going to do it for him because I think this story is hilarious! Well, Joey didn’t think so at the time, but we can now laugh about it after the fact. Joey, or Joseph, as he’s know by in the world of real estate, just recently purchased an iphone. This phone is amazing! If you don’t own one, you are living in the stone ages in terms of technology. I don’t own one, so I’m technically a cave woman, but perhaps one day will make it into modern times.
Joey has also been doing a lot of road biking these days, so the iphone provides some tunes to make a long hard ride much more enjoyable. There are cool gadgets out there, and one such gadget is an iphone holder that attaches onto your bike. So, thanks to ebay, Joey purchased one such gadget from China for one dollar. Yes, one dollar. You probably see where this is all going right? Well, they can make things like this really cheap in China.
So, about a week ago, Joey was on a late night ride up a canyon road with a buddy of his. The great thing about riding to the top of something is the ride down. On the way down the mountain, Joey went over one of those metal man hole covers, not a huge bump, but a bump in the road none the less. As you may have predicted, the bump sent the iphone flying out of the holder. As Joey describes it, like his precious phone is a human being or something, “My iphone was hanging down by the ear buds, holding on for dear life.” So, picture Joey on a bike, flying down a mountain with his iphone dangling from his ears by the ear bud ear phones. Well, he was trying to slow down, trying to reel it in by the cord when the phone swung in toward the front wheel and hit a spoke. When it reached the spoke, it was pulled in and then proceeded to hit the fork in the bike. When this happened, Joey said that the phone just exploded. Not a flaming explosion, but just burst into a gazillion pieces.
Joey and his buddy were left to pick up iphone pieces scattered throughout the street well past midnight. The sim card was located and was actually intact which was a relief. The sim card was put into a spare phone until another iphone could be delivered. Yes, he got another one because a real estate broker can’t be without his phone and can never be without his iphone.
The lesson here is never put a $400 phone into a one dollar bike iphone holder made in China! I would love to hear your phone mishaps because I know you all have a story to tell…
Hogle Zoo playground
Zoo fun!
My son is such a man!
This weekend we took the RV up the mountain to Rockport for a little fishing and some r&r. We left Friday evening and I ran around, frantically trying to get everything packed up. I did have to run by the pharmacy that day to fill some prescriptions for Julia. I picked up the dreaded TOBI, along with three others, and when I walked out the door, tears welled up in my eyes and I quickly pushed them back. I’m sure as time goes by I won’t have this reaction to coming in contact with TOBI, but filling it means Julia and I devote another hour of our day to fighting cystic fibrosis. It makes for very long treatments and very long days. I wore my FUCF tank-top for the occasion, because darn it, sometimes that’s just how I feel. What I would give to come home after a long day and just put my kids right to bed. What a treat that would be…
My new favorite tank-top
Are we done yet? No we still have another 30 minutes of TOBI!
OK, I done complaining now…on to our fantastic weekend. We got up to the lake late Friday evening and the kids tried some fishing and then rode their bikes. They liked riding around on the paved campground roads. On Saturday, the kids fished, swam in the lake, dug in the sand, and rode their bikes. Sunday was a highlight because we rented a boat and took it out on the lake for a couple of hours. It was a blast!
My parents were with us and so was my brother Dustin. Now the tricky part was getting Dustin to board the boat. You see, for those of you who don’t know Dustin, he has Down’s Syndrome and, in his day has watched way too many Jaws movies. So, he is deathly afraid of large bodies of water because he believes that there are sharks swimming around, ready to attack. My parents can tell you a hilarious story of Dustin on a cruise ship during the “drill.” You know, the one when you all have to put on your life jackets and go out on deck to your muster station. Yeah, that’s the one. Well, lets just say that all the people at my parent’s muster station got a good show of my dad pulling Dustin out on to the deck. Dustin is not a kid anymore, well, not physically anyway. He’s almost my age, so good entertainment for all.
Well, Dustin wasn’t about to get on the boat with us at Rockport, but my Dad was trying anyway. This nice man came up and offered to help. Joey told him that Dustin thought there were sharks out in the lake and the man explained to him that there weren’t any sharks and offered to walk with Dustin and help him aboard. Surprisingly, Dustin trusted this man and held his hand and walked out onto the deck and climbed aboard! He held on tight to the side of the boat the entire time and had a death grip on the tie off rope, but he did enjoy himself, especially when Joey opened it up and went really fast. You could see a look of enjoyment come over his face. My dad did try to get him to fish, but he refused, holding tight onto his rope and the side of the boat, not even considering letting go of either to hold a fishing pole.
See, he is enjoying himself...uh oh, is that a shark I see! Notice Dustin's hand...holding tightly onto the side!
We came home Sunday evening, totally exhausted. We got the RV all cleaned up and ready for next time. We are making some good memories with our kids in this RV. So the tradition continues. Next stop…Yellowstone!
Austin attempting to catch a fish...sadly, no luck again this time.
The captin at the helm...
Julia, enjoying her boating experience.
Olivia, as happy as can be!
My kids and my mom
The kids loved playing in the water and digging in the sand.
Austin learning monkey skills
Olivia on the rope
Austin can now make it half way up the rope.
The foam block landing pits are a big hit with all the kids.
Hope you all have a fun 4th!
Sweet sisters and their BBQ attire
Ready for church on the 4th of July
4th of July hike
Such a great lookin' bunch!
Just had to put this one in because she's so sweet.
Me, wishing I was the one in the backpack asleep...
This weekend was a great weekend for our family. We couldn’t have asked for better weather as it was much cooler the past two days, even a bit chilly in the evenings. We started the weekend off right by cleaning the house and getting ready for a Saturday evening BBQ. The girls helped me make a flag cake for the occasion and they really enjoyed mixing cake mix after cake mix and putting the fruit touches on the top. The hardest part was making sure Julia didn’t fall into the cake smashing it in it’s entirety.
We had a very tasty meal. The menu included carne asada, fresh tortillas, corn on the cob, rice, beans, seven layer dip, watermelon, fresh cherries, cake, ice cream, and all the fix-in’s you could imagine for some tasty carne asada burritos. I guess having a Mexican-style meal may seem strange for the 4th of July, but I couldn’t resist. I had finally stumbled upon a grocery store that sold carne asada, and I had to have it! I’ve survived six years in Utah, not knowing where to purchase ready-to-grill carne asada and I found it and had to have it. The food was great and I was very pleased with the meal. I even introduced the whole mayo and Parmesan cheese combination for the corn on the cob and some thought it tasted fantastic. If you haven’t tried it, you’re missing out.
Saturday evening we lit fireworks at a near by high school parking lot. Why there? We found out that you can’t light fireworks east of Wasatch Boulevard. We are just one street east, so we are in a no fireworks zone…bummer! We put the fireworks and the kids into the motor home, parked, got out the lawn chairs and had our little family fireworks show.
We headed home around 10 so we could see what big fireworks shows could be viewed from our balcony. We soon found out that from our front porch, you could see multiple fireworks shows. Our best view was of the Sugar House fireworks show. It was quite a treat to get to see the show without fighting the crowds. We could even see Magna’s fireworks show going on way over on the west side. This was the first 4th in this house and we look forward to many more to come.
Since the celebration of the 4th happened on the 3rd, today was just another Sunday. We went to church and then did a short hike with the kids and dog. The kids spotted some butterflies and a lizard and enjoyed picking wild flowers. It was a great way to end the weekend.
I guess I feel the need to reflect a bit today. I feel very grateful to live is such a wonderful country with many opportunities and freedoms. As a woman, I take for granted the ability to wear a pretty little dress to church and show off my Body Pump calves. We don’t think that wearing a tank top is such a privilege, but we don’t live in a country where the only part of a woman that can be exposed is her eyes. The fact that my daughters can go to school and get an education, a higher education, and beyond is a true privilege, a blessing.
We have so much living here in America. I recently finished reading The Power of Two. It is a story about twins who were born with cystic fibrosis and both eventually survived double lung transplants. Joey and I got to hear them speak at the hospital a couple of months ago. These women are half Japanese and they have traveled to Japan many times. What I found simply astonishing is that in Japan, people with cystic fibrosis are lucky to make it past childhood. Japan does not approve many of the medicines that Julia has the privilege of using. My knowledge of the world is so very limited. I do know that we are all so blessed to live here, in this country. We have so much and take so many things for granted.
To switch gears for a minute…it has been quite the roller coaster in the CF community these past two weeks. One beautiful, 28-year-old cyster got her new lungs! So very exciting for Piper. How blessed she is and how excited I am for her to have this new chance at life. The hardest news for me was that of Conner Jones. He is spreading his angel wings and has flown home. The reason this was such difficult news for me is because Conner was Austin’s age and because Conner had cystic fibrosis like Julia. Too close to home for me. I so appreciate his mother Sarah for sharing her story with the CF community and with the world. She has put into words the very intimate details of Conner’s last days, right down to his last meal. I got to see into the world of a very courageous CF parent. Sarah has set such an example for me.
I guess since our family lives with CF everyday there are many unanswered questions that I’ve had. These past two weeks, through Sarah’s blog, I’ve had my questions answered. She painted a very vivid picture of what it was like to be a parent of a child with CF who doesn’t make it past childhood. I think I’m not the only CF parent who wonders if his or her child will ever make it past childhood…wonders what it would be like if the end came sooner than we’d like. The fact is that 50% of people living with CF should expect to live to age 37, but what about the other 50%. The fact is they won’t. I wonder every day what 50% my Julia will be in. I don’t think I’m alone with these thoughts as I’m guessing probably every CF parent wonders the same.
Live every day like it’s your last. Savor the time you have with your families and your children. Our time here is very short, CF or not. Live, love, breathe…
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