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Okay, I'm no longer making promises about keeping up my blog. I clearly can't keep them. I blame it on the fact that my husband got me an iPad and an iPhone and once you have Mac, you never go back. But I've been busting out the ol' laptop lately and it's time to update with pictures.

For those of you friends with me on FB, you've seen them but since my mom refuses to get a Facebook account, I'm going to have to post them here :)

Here is our Halloween pictures that we took when we went to Saddleback Church for their Blocktober Festival. We had a blast!

Ben could have spent hours in the fire engine and police car. I told him this had better be the only time I see him in the back of a police car!

We also visited the pumpkin patch with my cousin and my mom when she came to visit.

We are slowly getting used to life in Southern California. The weather has been beautiful and we've already been to the LA zoo, Legoland, and multiple malls.

Blogger has also updated their program so I can upload photos faster and with the holidays coming up, I'll add more. I know people appreciate our updates and the pictures. Thanks for hanging in there with me!

We have arrived!

We have arrived in Orange County! I know its been forever since Ive posted but I'm back! I finally downloaded an app so I can blog from my iPad.

The move was fairly easy but tough emotionally. It was hard to leave our friends behind. They threw us an awesome going away party with a bounce house, pizza, and cupcakes. As I told our playgroup, we are so blessed to have supportive friends in our life. When we received Ben's diagnosis one of my biggest fears was how we'd be treated amoung other kids, but our playgroup put my fears to rest. Ben was treated no different, and they went above and beyond in keeping sick kids away. We are so thankful for them.

My Cousin lives only a mile from us and she has a 4 1/2 who Ben adores. They've been excellent playmates and we've been swimming in my aunts pool a couple times.

Here is a picture of both. As you can tell, dressing up is one of their activities.

I promise to update more frequently and to share more photos. Thanks foe hanging in there with us!

Announcement

Well, my first announcement is that I’m still alive and I’ve been seriously neglecting my blog. I apologize to all who follow my blog and I know many family members miss my posts.
My other announcement is that we are moving! If you know us, you shouldn’t be surprised. This is our 6th move since we got married four years ago and my ELEVENTH move since I went away to college in 2000. Needless to say, I can pack boxes in my sleep.
Ryan has been promoted to management at his work so we are packing up and moving to Orange County, 8 hours from where we live now.
I have to be honest, I am having an extremely hard time with this move. I am leaving my friends, our playgroup, our clinic, and our home behind and I often find myself questioning our decision but I am trying to focus on the positive. I believe in my husband and support his dreams and his quest to make a better life for our family. I have no doubt the first couple months are going to be hard but I am hoping we all adjust quickly.
This bodes well for my readers because I’m going to have A LOT more free time and family won’t get to see Ben as much, so blog posts will be more frequent. Please be patient with me the next couple weeks and I swear, it’ll pay off in the end. Lots and lots of photos will be coming up soon <3

The Silver lining

There has been something positive out of the last couple crazy weeks.

Ben has officially declared PSEUDOMONAS FREE!! Yes, his culture did NOT grow pseudomonas only some funky bacteria I cannot pronounce. He does have a cough but we’re going to watch it and give him some time to get over it himself. In a week we’ll reevaluate if he needs oral antibiotics. Hooray!!

This is a HUGE weight off my shoulders and I am writing Cayston a thank you letter. I had high hopes for that drug and it did not disappoint. Thank you for everyone’s prayers, I am off to celebrate!

Clinic & Photos

I had to start this post off with some pictures of my energetic boy!

This guy has been keeping us on our toes lately. He’s full of energy, attitude and a zest for life. I think Ryan said it best the other day- we can’t wait for him to get up in the morning and we can’t wait for him to go to bed at night. He’s such a joy but exhausting!

Our full 12-week clinic visit was yesterday, down in the Bay Area. It went pretty well, Ben’s lungs are clear but he has not gained any weight in over 2 months so that concerns his doctors. He did grow over 2 inches in height so I’m not as worried as they are, however, we have decided to switch his enzymes from Creon 12 to Zenpep 15. His diapers have been a bit loose lately so we’re hoping the enzyme switch will improve his stools and weight gain.

But I wouldn’t be surprised if this kid is burning off all the calories he intakes. He just loves to run and wrestle with his Dad. Our nutritionist talked about adding some more high-calorie foods into his diet and I cringed when the words “McDonalds” came up. She encouraged us to let Ben eat there more often but I have some issues with that. He gets Mickey D’s, as a treat, about once a week if not less and while I understand the need for high-calorie foods, I have an issue with feeding him junk food. In my opinion there is a difference between food that is high-calorie and junk food. I understand in extreme cases, CFer’s need to eat fast food a lot but we just aren’t there. Ben is still in the top 70th percentile (a big drop from his 90th status for over a year) and is in the top 90th percentile for height. I just can’t validate Ben eating fast food anymore then he does. He needs to develop healthy eating habits and those don’t include microwaveable meals or fast food. I just believe there are other “healthier” ways to add calories to his diet.

We will be adding Carnation Instant Breakfast into his milk, eating more peanut butter, and adding a bit more butter to his waffles in the morning. This, combined with his new enzymes, will hopefully help him put back on some weight. If anybody has anymore suggestions, I’d love to hear them.

They cultured Ben before we left and the results will be in next Tuesday to Wednesday. This is the big if culture for him. If the this culture comes back clear, we will officially be declared Pseudomonas free. Fingers, toes, and other appendages crossed, this happens. I’ll let everybody know when the results come in ASAP.

Lucky number… 8?

Haircut number 8 that is! Yes, Ben got his 8th haircut this last weekend! Ryan finally decided to attempt the haircut himself so we could save some moolah on haircuts. Ben did great and it only took 2 popsicles to get through it.

Now, I know some people will be disappointed but a buzz cut is so much easier in the summer. During Gymboree, Ben gets really sweaty and this will hopefully help keep him cool during out hot summer months.

We have lots of fun stuff coming up. Full clinic visit next week where we’ll see our whole team and Ben will get cultured again. Fingers crossed that he cultures no pseudomonas this time so we can officially say, we are pseudo free! The 9th is Ryan’s 30th birthday, the 11th is our 4 year wedding anniversary and the last weekend in August we are flying down to San Diego to celebrate both Ryan’s birthday and our anniversary. This summer sure has been busy for us!

Zooom!

Does anybody else realize that summer is almost 2/3rds over?! I cannot believe how fast this summer has gone. Before we know it, it’ll be fall.

My little man has kept us on our toes lately. He’s developed quite the persistent personality, convinced that anything he wants will be given if he only says “Peas” first. Trips to Target are getting harder and harder especially down the 1$ isle. Target trips may have to go on my list of things to do when I am alone.

Ben has become more and more of a night owl, often not going to sleep til after 10pm. He’ll lay in his bed, often times for hours, singing and playing until he falls asleep. There are times in which I am out before he is! He insists on sleeping in his truck socks even when it’s cooled down to just 85. Ryan claims he gets his stubbornness from me but I won’t hear anything of it. All bad traits are deferred to Ryan, ha!

He jumps off everything even the highest platform at Gymboree. My bets are next summer, we’ll have a broken arm.

Ben taking a flying leap from his toy slide.

This week in playgroup we painted plates and tiles which was really fun. Within the last couple months our playgroup has almost doubled with new babies being born. It’s fun because I get my baby fix then go home to have a glass of wine and sleep through the night.

Do you see the cars next to Ben on the table? We don’t go ANYWHERE without them and I even have an “emergency car stash” in my purse. Ben is a little boy, through and through!

Expanding Vocabulary

Ben is talking more and more everyday. I’m so glad we didn’t go ahead with ST! It would have been just one more thing for us to add into our schedule and I’m glad we decided to give him extra time.

Ben is probably up to 20+ words these days. Some words he’ll just say out of the blue and Ryan and I will look at each other and say, “did he just say ____?” The other day, we were walking around down town and stopped in front of a store window. There was a cake on display and Ben pointed to the cake and said, “cake.” Now, I have no idea where he learned the word cake! I’m not usually a baker, especially not during the summer months, and when I do bake it’s a cake-from-a-box. I am no competition for Martha Stewart. I had hoped to be one of those mom’s that had fresh cookies waiting for her kids when they came home from school every day but as it goes, Ryan and I would eat them before the kids got home, ha!

I have finally graduated from “Mom” to “Mommy” and it warms my heart to hear him say it- except at 3 o’clock in the morning. Ryan is still holding steady with “Dad”, Sailor (our cat) is still “meow”, and every time we see a train it’s “boose” (caboose). I hope ben will continue to add more and more words until he’s speaking full sentences. We’ll just see!

Sunday night

I can’t think of a more creative header so I typed the only thing that came to mind

I haven’t been in the blogging mood because I’m sure some of you figured out that Jamie had baby Peyton, Thursday morning. The same Jamie that I went to Minnesota with and was only 35 weeks along. Peyton had meconium ileus issues due to her CF and had to be born early. I have to say, not only is Peyton gorgeous but a fighter. The road ahead won’t be easy but it will get better in time.

Ben went through the exact same thing when he was born. At 36-hours-old he also had MI surgery, so I have a *bit* of an idea of what Jamie is going through. It isn’t easy but it will get better.

Now, on to the good news! Ben’s second culture (2 of 3) came back CLEAR of pseudomonas! That means we don’t need to start Cayston again this month! Woohoo! While, I am thankful that it appears the drug helped rid Ben’s lungs of the nasty little bacteria, I am SO thankful we don’t have to go back to 3 treatments a day. Just one more clear culture to say we kicked Mr. Pseudo to the curb!

I will get better with blogging again, I swear! For now I leave you with a picture of our little man who is sitting on top of his favorite car- a jeep! He calls them out when he says them, every time. I’m getting used to hearing “Jeep!” when driving and realizing that he picked out a jeep two streets away!

Minnesota

I’m going to do a quick post because I am exhausted but I just had to say, I had a BLAST in Minnesota with Jen and Jamie. I was nervous before I left but never once did I feel uncomfortable or anxious. Jen’s family was extremely welcoming and I was so excited to finally meet her and Gavin.

Jen, me and Jamie

My days were full and crazy but extremely fun.

I will post more later. Right now, I’m enjoying my time back with my little man!

Hello and goodbye

I realized I have to do a fourth of July post today because I leave for Minnesota tomorrow!

That’s right, after a year of planning, I’m heading out for Jen’s wedding tomorrow! I’m so looking forward to seeing her but am anxious about leaving Ben for 3 1/2 days, the longest I’ve ever been away from him! I have no doubt my days will be filled and it’ll go by fast.

We had a fun fourth of July this year, the best one in the last couple years. Ryan’s grandma lives out in Rancho Murieta (a small community in the middle of nowhere) and every year they do “big” fireworks, so we headed out there late afternoon.

Since the weather has been scorching lately (low 100’s) we decided to bring Ben’s pool.

He put of quite the show if you can’t tell from the photos

He loved playing in it and it helped keep everyone cool. Then we went on Ryan’s grandmas golf cart around the community.

It was all fun and games until the golf cart died! We had a sweaty walk back- not fun!

Overall we had such a blast and we so proud of Ben who was still going strong at 10:30 pm! He was on a firework high!

Epic Failure

Urban Dictionary describes epic failure as this:

a failure so incredibly astounding it goes down in history with the guy who threw his shoe at President Bush and missed and Pet Rock.

"You just misspelled your name... epic failure.”

Well Ryan and I had our own epic failure this week. It started out with good intentions but resulted in us both shaking our heads and going home with a huge bag of popcorn, half an icee and a refund.

The epic failure you say? Taking Ben to see Cars 2. Yeah.

I tried to set us up to succeed. Got him down for his nap early, a HUGE bag of heavily buttered popcorn, matchbox Lightning McQueen and Mater in hand, Cars t-shirt on chest, and mommy and daddy at his side. We even played in the arcade during the previews in an attempted to “not lose him” too early.

The first indicator of the epic failure should have been the fact that he wouldn’t even sit in a seat. So we moved to the handicapped section where Ryan and I could sit and he’d walk around.

Next indicator of epic failure? Completely ignoring the movie and pointing out every single light on the nasty, sticky ground. I saw more of the movie then he did.

Last sign of epic failure? Ben fussing and trying to push open the heavy movie theater doors to leave after 30 minutes.

In conclusion, Ben’s first movie was a huge failure. But at least we had a good laugh and full bellies from all the popcorn.

Jelly Beans

Jelly Beans are my life-line lately. Treatments have been going a little, well, rough the last couple weeks. With our beautiful weather and fun backyard, the last thing Ben wants to do is sit down and be strapped to a machine. So, we’ve had to improvise. Bring on the bribery.

Now, I am not above bribing my child. Not in the slightest. It gets things done.

Ben now gets 2 Jelly Beans when he puts on his vest and 3 when he’s done with the neb. He never hesitates to remind me of this fact and we’ve even incorporated counting into our game. He counts out exactly the right number (but has been known to pop one into his mouth before I can get to it) and lays them on his giraffe to eat slowly.

I feel like writing the Jelly Belly factory a thank you note. Just because we have to do treatments, doesn’t mean it needs to be painful.

More sunshine

I know I’ve said in the past that we love our new backyard but I have to say it again. We love our new backyard especially now that it’s been 100+ degrees outside.

When Ben wakes up in the morning, he asks to go outside. When he gets up from his nap in the afternoon, he asks to go outside.

We eat dinner outside.

We have gotten more miles out of Ben’s pool then any of his toys so far. He jumps in and out, in and out, in and out… (you get the picture)

Ben entertaining himself while Ryan and I get to watch him while sipping a drink?

PURE HEAVEN.

We stayed out until past 8 o’clock last night. I {heart} summer.

Babies

Last weekend I was surrounded by baby-goodness. Saturday morning my cousin had her second baby, a little boy, I went to a baby shower and one of my closest and dearest friends had her much anticipated first baby girl.

This Saturday I finally got down to the Bay Area to get my hands on baby Kaitlyn. She was worth the wait! She is the tiniest, yummiest, and most scrumptious thing ever.

She looked adorable in her pink polka dot outfit with a cow. I promptly decided that Ben will marry her one day!

Father’s Day was a good day with Ryan being pampered all day. Ben and I are so thankful for a wonderful, loving husband and father. He deserved his day of pampering. For now, we are just enjoying this hot weather and trying to stay cool!

Here comes the sun

Like I said before, it’s finally warmed up here!

So, what did we do? Break out Ben’s never-been-used birthday pool of course!

In typical Hughes boy fashion, he repeatedly launched himself down the slide, splashing into the water, giggling the whole time.

It was a perfect afternoon. Mid-90’s temp, just the way I like it.

Even in the pool, we didn’t abandon our trucks.

Mr. Sun, we are glad you made your reappearance!

Summer time

Last weekend all three of us went down to Monterey to celebrate our brothers graduating. Yes, Ryan and I have brother the same age and they go to the same school which makes things very convenient  

The weather down in Monterey has been just yucky as it has been here in Sacramento. We’ve all been wondering where our summer went because it’s usually in the 90’s by now. But we had a great time none the less and I continued to stay in Monterey for another week.

While I had fun by at my parents, it’s always nice to come home. I think Dorothy was right- there’s no place like home.

All photos

It’s been way too long since I posted some photos of my little cowboy so I thought an all picture post would be fun.

It was a Toy Story theme playtime, with his Buzz PJ’s and Woody hat!