The Hughes Family

Tap, tap, tap....

2011-11-11T10:26:00.000-08:00

Is this thing on?

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!

2011-09-27T14:03:00.001-07:00

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

2011-08-28T20:27:00.001-07:00

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

2011-08-18T15:38:00.001-07:00

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

2011-08-12T17:09:00.001-07:00

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?

2011-08-03T13:56:00.001-07:00

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!

2011-07-28T16:39:00.001-07:00

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

2011-07-20T14:31:00.001-07:00

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

2011-07-17T22:53:00.001-07:00

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

2011-07-11T14:40:00.001-07:00

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

2011-07-06T09:04:00.001-07:00

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

2011-06-30T20:27:00.001-07:00

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

2011-06-29T15:25:00.001-07:00

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

2011-06-23T20:27:00.001-07:00

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

2011-06-20T17:08:00.001-07:00

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

2011-06-15T15:58:00.001-07:00

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

2011-06-14T08:59:00.001-07:00

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

2011-06-12T11:19:00.001-07:00

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!

Results

2011-06-09T15:01:00.001-07:00

I know, I know, another blogging break. We’ve just been super busy around here so I’ll get to the good stuff first- Ben’s culture results.

I was doubtful. Ben’s had a cough since we stopped Cayston and I attributed it to pseudomonas, thinking we still hadn’t ditched the clingy little bastard that is now a thorn in my side.

By Sunday afternoon, Ben’s cough had gotten so bad that I called our NP and had her write a prescription for Bactrim so Ben could start it. He’s been on it for 4 days and his cough is almost gone. Now on to the good stuff.

Drum roll please…..

ONLY NORMAL FLORA GROWTH!!

That means no pseudomonas is showing up! We may have been able to shake it! Now, I’m being cautiously optimistic and until we get three free cultures, I won’t consider it completely gone but for the next month I plan on reveling in the feeling of not doing extra treatments or figuring out the next step. I’m having champagne to celebrate and Ryan and I have been giving each other high fives. Whoop! Whoop!!

CF clinic visit

2011-06-02T18:57:00.001-07:00

Today, was our 3-month Pleasanton clinic visit. Usually I wake up feeling anxious about these visits, but today I wasn’t. Ben’s weight’s great, his appetite is fine however he still has a dry cough. But for some reason, I’m not too worried. If he cultures pseudomonas again, we’ll figure out the plan and go from there. I’m letting go of my worries and just being thankful that we are happy and healthy.

Our “little” man is still tippin’ the scales at nearly 34 pounds! Only up 1 pound from 2 months ago but since he’s still in the 92 percentile (!!!!) they are not worried in the slightest. He’s at the age where he’s going to start lengthening out and growing thinner. He did grow a whole inch and is now half an inch shy of three feet! We are so thankful that Ben continues to grow and thrive!

His lungs are clear and he was even able to cough on command for our NP to hear. This helps her listen to his lungs better and make sure there is no crackling. We even introduced him to the lab where he will eventually do his Pulmonary Function Tests (PFT’s). He had an infant one done under sedation about a year ago and I’m hoping we can start doing them regularly in the future. I want to introduce him to the equipment and how to blow now, so he’ll be a pro by the time he’s around the age to start. Our clinic hopes to have him up and going with PFT’s around age 3. Ben did great with the equipment and was even able to give a couple practice blows.

Eventually his nose will be plugged and he’ll take a deep breath and blow into the hairdryer thingy (we use technical terms around here) and the computer will measure how much air he can blow out. If there’s an infection or he’s not feeling good, the numbers will go down indicating a problem. Then we know to step in and change up his routine. I’m hoping that by the time he gets good at them, we can do them every appointment.

A throat culture was taken and we were on our way. We swung by Walmart to allow Ben to pick out a toy and it shouldn’t surprise anyone that he picked out a new car, bringing our toy car count to a gazillion and one. A milkshake at the golden arches completed our day.

The culture results should be back next Tuesday. Once we know what and if he grows anything, we’ll go from there. I’ll deal with the results then.

A blogging funk

2011-05-31T09:22:00.001-07:00

Once again, it’s been awhile since I’ve updated. I’m kinda in a blogging funk right now. There’s lots going on, some good, some bad but most I’ve come to feel at peace about.
I’ve always heard horror stories from other CF parents about losing friends or family members after their child’s diagnosis. Some people are scared by all CF entails, don’t want to get emotionally attached or simply choose to not understand CF.
Up until recently, I’ve been proud to say that not only have we not lost one single friend or family member, but we’ve found that people have come out of the woodwork to embrace Ben and all that he is. But times are changing and that’s no longer a true statement. While it saddens me, I feel comfort in the fact that our CF team stands behind our decisions regarding Ben’s health 100% and in the end, that’s what matters. Like I said before, I have finally come to a place where I am at peace with the fact that I cannot control other peoples choices, heck I don’t even have to understand them. I can only hope and pray that minds are changed and bridges rebuilt.
Now on to the good stuff. Over the past week, Ben has started saying THREE new words!! Hot, bump and car are now apart of Ben’s vocabulary! Ryan and I are so excited about this and are delighted with his progress.
I set down his dinner plate in front of him a couple nights ago and he looked at his food and said, “hot”. Ryan and I were jumping up and down giving him high-fives!
Now that he knows the word car, he’s been hollering it out while we’re driving. Not only can he say the words, he’s using them in the right context.
I feel good about not pursuing speech therapy. As I thought, he only needed some more time to start speaking. I have heard from plenty of mom’s that their little boys didn’t start speaking until they were three and it really made me feel better. We’ll continue to encourage Ben to say new words, even when he shakes his head at us, ha!
I hope everyone had a good Memorial Day weekend. We so enjoyed having three days together and even got to go out to a BBQ without Ben yesterday. It was great to see friends and get some “adult talk” in!

A successful Strides

2011-05-24T20:12:00.001-07:00

We are done! And successful!

I don’t think we could have asked for a better day. I got out of bed easily (at 4:45) and my mom and I were on the road to the Capitol by 5 am. We went through set up and before I knew it, our team was there to walk.

I can’t say thank you enough, to all our walkers. I know some people traveled far to be with us and we appreciate all the effort. A huge thank you goes out to my mom and Ryan’s aunt and grandma who stayed after to help with the raffle.

The weather was gorgeous and everything went off without a hitch.

There was a wall of champions put up to show off all the CFer’s in our area.

It took all weekend for me to recover but I truly think it was our best year yet. Thank you again to all who came out to show support for our little man. We exceeded our Sacramento chapter goal of $150,000!

Disneyland Part II

2011-05-19T20:59:00.001-07:00

On Tuesday we hit Disneyland in the morning and California Adventure in the afternoon. My mom took Ben back to the hotel room so Ryan and I could have an afternoon to do the “adult” rides. We took on Indiana Jones, Space Mountain, Tower of Terror and Soarin’ over California. Ryan and I had a blast just hanging out together, drinking beer, eating cotton candy (just me) and then getting stomachs from all our food and rides. California Adventure seriously has the best food!

Before all this though, we did our character breakfast. We were both a bit hesitant, not knowing how Ben would react to the characters. Last thing we wanted him to do was freak out in the restaurant. But sure enough, Ben loved seeing all them and even gave them hugs.

The carousel ride that he LOVED then threw a major tantrum when it was time to get off. We had to peel him off the horse, kicking and screaming.

The slide at CA we went down a gazillion times!

Isn’t that the most priceless smile?!

In two days is our walk and it’s not too late to join us! Click the upper icon that says, Ben’s Brigade to support an amazing little boy!

Great Strides details

2011-05-18T14:30:00.001-07:00

Okay, this post is for my awesome Great Strides team, Ben’s Brigade!!
We’ll be meeting at the Capitol around 8:30am. My mom and I’ll have been there since 5:30 (eek!) so anytime you want to arrive before then is fine.
There will be coffee, muffins and fruit in the morning.
There are going to be TONS of activities for kids there. Fire engines, a clown, arts and crafts and a lot more. Come prepared to have some fun!
Lunch will be served after our walk.
We will take a team photo either after the walk or just before. Please don’t leave til then! I want to make sure we get everyone in it.
Bring some cash. There is a raffle with some REALLY, REALLY cool prizes that I helped put together. Trust me, you’ll want to participate.
There will also be Venders Village where various people will have tables set up, showcasing their different products (ie- Pampered Chef, Jewelry, Hair clips) so you can enjoy all they have to offer.
Any walkers who have collected money (that wasn’t donated online) will turn it into me or Ryan there. I’ll hand it off to the right people to be counted towards our team goal.
I will check in for our group. Just come find me and I’ll give you your t-shirt and food coupons.
This year we won’t be wearing anything specific. I’ll have our BB sign to designate our team and possibly balloons but nothing specific people need to wear. I just didn’t get my stuff together this year to make it happen.
You can park in the 10th and L parking garage for a flat $5 fee for the day.
GS is stroller and dog friendly so bring either.
Call me or Ryan anytime. We can’t wait to get out and raise awareness for our little stud!!

Disneyland

2011-05-16T16:37:00.001-07:00

We’re back! Phew, it’s been awhile since I’ve been on here. I took a break from blogging and even answering my phone while on vacation and it felt WONDERFUL! But we’re back and have hit the ground running because GS is this weekend!

But first to our trip. We had a BLAST! It was fun, exciting, exhausting and all in between!

Saturday, we headed down to Santa Barbara where my grandma lives. Ben did awesome in the car for over 6 hours! It helped that I bought some new DVD’s for him to watch because I couldn’t sit through The Incredibles (his current favorite) for 6 hours.

We were in SB Saturday to Monday morning when we headed out for Anaheim.

We got to the Disneyland Hotel Monday afternoon and immediately hit the Magic Kingdom. I’m only going to post up a couple of photos because I currently have over 100 already on my computer. If you’re my friend on Facebook, you can see them all HERE.

This was only the first day! We managed to get a good nights sleep and hit Disneyland and California Adventures the next day.

I’ll post more tomorrow, I’m off to my last GS meeting before Saturday. If you’d like to donate or join us click HERE. Thank you!

3 days

2011-05-05T10:01:00.001-07:00

In 3 days, we head down to Southern California to start our vacation! I am so excited for this trip. Ryan and I can’t wait to take Ben to Disneyland for the first time. He’s going to FREAK. I’ve already set up a Mickey Mouse character brunch for Tuesday before we head to the Magic Kingdom.

Of course, these next two days are full of chores, and preparing to leave. Paying bills, doing laundry, cleaning house and packing. We are stopping our Cayston treatments for a week at the okay of our NP. We are completely okay with this and feel it’s what’s best. I’ll pack enough nebs to get us through two days at the hotel and then will boil them when I get to my aunt and uncles. After Disneyland, we’ll spend a few days with family down in Mission Viejo and we have a lot planned out but I’m not sure how much we’ll get to. Lego Land, LA Zoo, Griffith Park and swimming are on the list. I’m so excited to get down to the sun and surf.

I’ve been nose-deep in my new book that arrived via UPS on Tuesday. It’s the 11th installment in my Sookie Stackhouse series that I love so much. I devoured the book in one day and was eager to jump online to participate in the book forum that I’m apart of. My husband doesn’t understand my love affair for Sookie but he embraces it none-the-less. I used to read a lot in high school but didn’t as much in college due to all the reading of text books I was doing (ha!).

After Ben was born and we got into a routine, I was able to pick it back up again. Reading is an escape for me and is the one place in my life where CF doesn’t exist. I’m just another avid reader online and my fellow Sookie-lovers know me as no other and it’s nice to not have to talk about treatments, pills and other stuff. I am looking forward to rereading my new book and diving into another series I’m starting this next week.

Before I go, I have to leave this video of my mom’s testimony about Ben and his CF that played at her church last week. It’s a wonderful video that brought tears to my eyes. Her part is at the beginning, you don’t have to watch the whole thing. For some reason, I cannot upload the video but you can click on the link. Enjoy.

http://vimeo.com/23176329

Wordless Wednesday

2011-05-04T09:12:00.001-07:00

Well, almost wordless. I had to post this because I thought it was hilarious

You can continue to donate in this little guys honor by clicking HERE! Thank you!

The devouring of a drumstick

2011-05-01T19:01:00.001-07:00

Project backyard

2011-04-30T12:02:00.001-07:00

Our backyard is finally done!! Once again, Ryan and I are super excited about it. We’ve been waiting to have a backyard for over a year and are relishing every minute that we have with it. Every day, Ben asks to play back in the backyard with his cars and we’ve already been able to unload some toys back there.

Without further ado, our new backyard:

Before

After

You may not be able to see it but we cut into the wall and made a gate for more access.

Before

After

Before

After

As you can see, we did some major work back there. We still need to power wash and paint the back wall but after that, we are done. It’s kinda small but we sacrificed backyard space in order to buy in one of the nicest suburbs in Sacramento. Plus, we have the park right behind our wall that has plenty of space for any other activities we want. Hope you enjoy seeing our new space!

CF update

2011-04-27T08:48:00.001-07:00

I promise my next post will be before/after pictures of our backyard. I’d have to clean up all the toys that are already littering it before I take the after pictures. I’ll do that this afternoon. For now, I thought I’d give a brief update on Ben, CF wise.

We are almost at the end of our first week of our second straight month of Cayston to clear up the pseudomonas growing in his lungs. This was my originally thinking of what I had wanted to do and Dr. N agreed. When the month is up, we will finally reculture Ben. If Ben still has pseudo growing we will switch it up again and go from one month of Cayston to another month of Tobi, switching months so he is always on an inhaled antibiotic. This is not the “official” plan but Dr. N is letting me do whatever I think is best at this point. I think most parents (and CF docs) would have given up by now and accepted the fact that pseudo is in their CFers lungs for good and hope it eventually goes away. Most patients start Tobi on/off for months until/if it clears up. Dr. N and our nurse practitioner have reassured me that it’s not the end of the world if we can’t eradicate it. However, I am not giving up. I refuse to accept the fact that we can’t get rid of it. While I’m not ready to jump back into IV’s, I am not going to stop trying different inhaled meds until it’s gone. Mark my words.

As I predicted, UCSF wants to do redo Ben’s blood results due to the fact that they were so outta whack when he was sick. Holding Ben down while he gets blood drawn is not something I’d put on my list of fun things to do but Ben handled it like a champ last time and the highlight of my day was watching him bypass the monster truck stickers for a Hello Kitty one at the end.

He has gained back all the weight he lost when he was sick. The chubby cheeks and thighs are back!

Tomorrow night is the CF education night held by UCSF in Walnut Creek. Dr. N is going to speak about any new advances in CF land and address any questions we have. I am excited to meet other CF parents that go to UCSF. Since we don’t live in the area, I haven’t gotten a chance to meet anyone. My mom is driving up to meet me for the evening. I am so thankful to have a mom who takes an active role in knowing more about CF and Ben’s care. It makes things a lot easier for me and I appreciate her making the drive. Thanks Mom.

I had to include this picture of Ben using his bubble making Mater as a seat.

Excuse the mismatched outfit. This was after he threw up everywhere and I just threw whatever I could find on him.

You may have noticed that I am now watermarking my pictures. Let’s be honest, there are some crazy people out there and I don’t want random people taking my photos and doing lord-knows-what with them. I’ll try not to plaster it across our faces but it needs to be in the center of pictures or people can just cut and paste around it.

Easter 2011

2011-04-24T20:44:00.001-07:00

We had a fun weekend despite the nasty weather outside. On Saturday, we took Ben to the Fair Oaks Egg hunt with our play group friends and had a blast even though it was packed!

They participated in an egg hunt then got to do their favorite activity- Run!

And of course, poke things with sticks

This morning we did an egg hunt in our new backyard (!) with Ryan’s grandma and aunt and uncle, but it was a quick because of rain. I was delighted to find pre-stuffed Matchbox car and Thomas eggs at Target. I knew they would be a good distraction at brunch later and boy did Ben enjoy them.

We were supposed to go to a BBQ dinner tonight but Ben came down with a nasty cough, causing me to do an extra treatment during lunch. He went into a cough fit and barfed every where including on me. He then refused to nap. Needless to say, we never made it to dinner.

Happy Easter!

Backyard preview

2011-04-21T22:07:00.001-07:00

I’m saving “before and after” pictures for my next post but I thought I’d put up some teaser photos of our newly renovated backyard. Ryan and I are so excited for this. We’ve dreamed of this backyard for years and now it’s finally here.

I know, I know, not too many photos but this is a teaser post. A full post will follow.

Stubbornness

2011-04-19T09:13:00.001-07:00

This is a picture of stubbornness. This is a picture of a little boy who refused to nap. It was a battle of the wills to get him into bed but Mommy won. Mommy always wins in the battle of wills. However, he made it clear that I can make him stay in bed but I can’t make him lay down.

He finally fell forward from exhaustion and slept with his feet on his pillow. Gotta love the terrible twos!

Prenatal diagnosis

2011-04-16T21:42:00.001-07:00

One of my favorite Mommy bloggers, Cassie, wrote a great post on prenatal diagnosis. She went through a prenatal diagnosis with her daughter Audriana and came across an article in the NY times on prenatal diagnosis which I just had to steal!

As most of you know, Ryan and I went through our own prenatal diagnosis with Ben and I stand by my decision 100 percent. I really don’t understand the whole “wait and see” type of thinking when faced with the risks of your child having CF but I understand that it’s not for everyone and people make decisions that they feel are best for them. But that wasn’t us. I am an advocate for prenatal testing and will again with possible future pregnancies.

Just because you go through a prenatal diagnosis does not mean that abortion is an option. It certainly wasn’t for Ryan and I. We both knew, no matter the outcome, that we were going to keep our baby. It wasn’t even something we discussed, we both just knew.

I’ve said it before and I’ll say it again, our Genetic Counselor was phenomenal. In fact, we still keep in touch with her and are excited to see her join Ben’s Brigade for the second year in a row. However, since she did not have a child with CF nor one with special needs we were presented with facts. She was not able to say things like, children with special needs seem overwhelming at first but are a HUGE blessing in disguise. Let me tell you, the facts about CF are pretty grim especially when you deal with hormonal/pregnancy changes at the same time.

But Ben’s prenatal diagnosis gave Ryan and I time to grieve, time to do our research on CF and most importantly, time to prepare. We meet with our CF team when I was 7 months pregnant and were blown away by them. We decided to collect and store Ben’s cord blood in case there were medical advances and it would come in handy. I had a c-section because he was already showing signs of Meconium Ileus (an intestinal blockage) and labor could have made it worse. I was semi-emotionally prepared for a NICU stay (I don’t think you can ever be fully prepared for that though). But most importantly, it helped us be ready for what was to come.

This article debates the fact that parents may not get a broad range of information concerning prenatal diagnosis. It’s interesting to read. You can find the article HERE.

Cayston Update

2011-04-13T14:41:00.001-07:00

We are a little over 2 1/2 weeks into our inhaled antibiotic and I have to say, I’m really getting tired of the three times a day treatment routine. It can be very tiring and quite frankly, all I feel like I’m doing is treatments or getting ready for treatments or planning out my schedule around treatments.

However, I’m still holding onto the hope that Cayston is it for Ben and that it will clear up the pseudomonas growing in his lungs. I shared with our NP that my thinking is for Ben to be on Cayston for 2 months straight then culture him, and do on/off months until he has three clear cultures. She said she was fine with this as there is no hand book or manual for CF. Every CFer is different and requires different treatments/routines. They are trying to figure out what works best for Ben and are willing to give Cayston 2 months to prove itself.

I am bummed because this mean we’ll go into our Southern California trip on Cayston. Disneyland, Lego Land, the beach, the zoo are all apart of our plan and it’s going to be annoying to say the least. I guess we can do our Cayston treatments at Disneyland?

Just one of those days in which I wish CF would take a long walk off a short pier.

Survival mode

2011-04-11T09:50:00.001-07:00

I wanted to update before I left for Southern California but I didn’t have the chance. I was in survival mode since Wednesday and had no energy. Ryan had to go out of town so I was all on my own.

Ben’s fever finally went away on Wednesday but a lovely cough took it’s place. He was still sleeping a lot and had no appetite so we were taking things slow. I took him back to the doctors Friday morning for his 2-year well child examine. I was thankful it was scheduled when it was because I wanted the doctor to listen to his lungs because I was hoping to avoid a trip down to UCSF. Besides losing a pound and a half (still in the top 80th percentile), there was nothing too serious to report.

However, we did make an appointment with an Audiologist to check Ben’s hearing and were given a referral to a speech therapist. At 25 months Ben still only says a couple words and should be farther along at this age. I do not think he has a hearing problem and am not overly enthused by the idea of speech therapy. I believe he just needs more time and will talk when he’s ready. I’ll see what the Audiologist says and what the plan would be for speech therapy and go from there. I’m not overly concerned about it because Ben can throw a football and do a summersault on his own so it looks like I’m going to have a star athlete, not a scientist and I happy with that.

Ben’s blood work came back and his numbers were all over the board but his vitamin levels looked good which is what we were after. We knew his numbers were going to be off, having been so sick so I wouldn’t be surprised if UCSF wanted us to go back and redo his blood work.

My trip couldn’t have come at a better time. I was glad to get out of the house and see my family. I love Southern California, I came back refreshed and a bit sunburned. Pictures to come.

On the mend.

2011-04-06T13:01:00.001-07:00

Things with Ben are starting to look up. His fever has finally gone away but he is still low on energy and appetite. I took him in to his regular pediatrician on Monday morning (which I immediately regretted because it was filled with kids hacking up a lung) and they said he’d need to come back in if the fever didn’t go away by today.

I’m also taking him in for his yearly blood drawl later today which I should have done weeks ago but was putting off. Now I’m thankful because the results will be sent to UCSF and we’ll be able to see if his blood work is showing any signs of something funky (that’s a medical term) going on. He usually rebounds a lot faster from sicknesses so the slow recovery is not easy for anybody.

On Saturday, I’m flying down to Orange County for 24 hours to celebrate my cousins baby shower and am looking forward to my mini-vaca. I only hope my little man is back to himself by then.

A BIG thank you to everyone who came out, donated and supported Spring for a Cure. We raised nearly $19,000 that goes directly towards research for better medicines and a cure. Thank you, thank you, thank you!!

Awareness Video

2011-04-05T17:14:00.001-07:00

I know, I have been super lazy on blog posts lately. Ben is still feeling under the weather and sportin’ a low-grade temperature so I don’t have much free time. But I’m hoping he’s rebounded by Thursday, in time for our play group at the park. In the mean time, I’ll keep you entertained with another CF awareness video from Team Asher.

teamASHER 2011 Cystic Fibrosis Awareness Video from teamAsher on Vimeo.

Spring for a Cure

2011-04-04T17:39:00.001-07:00

I haven’t had a chance to updated yet on Spring for a Cure because Ryan and I came home Saturday night to a VERY sick little boy. The good news is the illness has stayed out of his chest and is only a fever but it’s the highest fever he’s ever had and the longest he’s ever had one.

First the good stuff. Spring for a Cure was a blast and a complete success! Thank you to everyone that came out, bought a ticket, donated a prize and contributed to the night.

My mom “won” (she likes to say that but technically she did buy them!) some great baskets that were put together with so many great items. I even won a Vera Bradley bag from the raffle.

I am already looking forward to next year. The wine was flowing, the food delicious and it was just great to catch up with everybody. We had nearly 20 of our friends and family attend!

Sorry to keep this brief but I have a hot little guy on my hands!

Sunshine

2011-04-01T10:00:00.001-07:00

My lack of posts should show just how busy we are around here! We’ve made it through “birthday party season” in our play group and are on full cake/pizza overload. Since we meet our play group friends at Gymboree (which is grouped according to age) all the kids birthday’s fell with in six weeks of each other. We have had a blast though and are very thankful for such a wonderful group of friends.

The Spring for a Cure event is tomorrow and I am so looking forward to it. Thank you to all who have donated or purchased tickets, some even purchased tickets even though they are not able to attend. Your support is very much appreciated!

The weather has been nothing short of gorgeous so Ben and I have been outside at the park soaking up the rays. He is such a boy, throwing sand around and wanting to just run. While his amount of energy is sometimes overwhelming, I know that it means CF is not getting him down!

I’ll leave you with some fun pictures of our little boy trying to squeeze himself into our new shelving unit.

Anna’s Story

2011-03-29T18:16:00.001-07:00

I came across this video and just had to share.

We hope you can join us May 21st to walk for Anna, Ben and all the other CFer’s who fight against CF everyday!

The Arrival

2011-03-25T19:11:00.001-07:00

Ben’s Cayston (inhaled antibiotic) arrived today, courtesy of the UPS man. As usual, there were mixed emotions. Wanting to hug the man then slug him just like with the arrivals of Tobramycin. Only this time, the medicine was in a HUGE box and I quickly came to learn that Cayston was a bit more complicated then Tobramycin.

It took over two weeks for us to finally get the prescription due to insurance. No insurance is going to approve a $5,000 medicine laying down and they needed prior authorization from Dr. N before they would approve it. Our NP was out of town last week so it took longer then expected but we welcomed a small break.

Cayston is a new inhaled antibiotic only an the market about a year. While this may lead some parents to hold off on it’s use in such young children, I am more worried about the pseudomonas sitting in his lungs. Since the drug is so new, I don’t have any experience with it and neither do most of my CF mom’s.

The bad part is that Cayston is administered three times a day. That’s one dose out of our usual routine of two so that will take getting used to. Luckily, it’s given through the Altera nebulizer which is super quick. Each dose is around 2 minutes long. Not too bad.

Cayston comes in a huge box that needs to be refrigerated so I had to make room on one of ourselves for it. Each dosage comes in two parts, an ample with sodium chloride and a vial with powered stuff at the bottom. I have to mix a vial and ample together then put in the nebulizer.

Luckily, the box is very organized so I can easily keep track of what does I have given.

I’m not sure what the over all “plan” is yet but am talking to our NP and Dr. N about it. I know they’ll take my opinion into consideration and I’m hoping to do two straight months of Cayston, then culture Ben and then start on/off months until we get three free cultures. There is no talk yet of IV’s again and am I okay with it. I have heard nothing but great things about Cayston and will continue to keep you updated as I know some CF moms are waiting to hear how we like it.

As usual, my little man is being a stud about starting a new medicine. I am so thankful for his amazing attitude, it makes life so much easier.

Sleep Issues Part ?

2011-03-24T13:51:00.001-07:00

It still seems to be a roller coaster around here when it comes to sleeping. Ben has gotten better about going to sleep at night, the problem is keeping him asleep.

It looks like Ben inherited my night owl gene and I’m totally okay with that. I’d rather go to bed late and sleep late, like him.

So we’ve been keeping Ben up later at night and starting a new routine. Part of the problem of him going to bed at night was that he thought he was missing out on the fun. It was taking him over an hour to fall asleep just because he was still too amped up. Ryan and I decided it would be good to unwind with him by watching a movie or cartoon in our bed all together. This also lets Ben know that we go to bed after him, we’re not sneaking back downstairs to play with his trains or color in his coloring books. Like him, we go to bed too.

We also decided to cave and get him a big boy bed. We found the perfect one at Ikea and let him pick out his bedding. It should come as no surprise that he picked out the car/truck bedding.

We’ve also been leaving his door open. While it’s a pain because Ryan has to be super quiet in the morning, it seems to be currently working.

I’m tired of crossing my fingers so I’m just hoping a new bed and routine are the key.

Thought I’d add a picture of my little monkey playing with his new birthday toys.

Type-A strikes again

2011-03-21T14:51:00.001-07:00

Ryan is a type A personality. If you know him, this is no surprise. He likes things clean and organized. I, on the other hand, am not.

As you can imagine, compromise is something we have to work on and I think we’ve both gotten pretty good at it when it comes to keeping our home organized. We’ve tried to meet each other in the middle and have come a long way.

I always wondered how Ben would turn out, meaning which personality he would inherit. Last week, I caught a glimpse into this question.

My mom brought Ben some play doh for his birthday thinking he’d really like the manipulative play.

Not so much.

He poked at it for a few minutes then decided to put it all back in the containers

and line them up in a straight line with the label facing front. Guess I don’t have to wonder anymore.

Fundraising galore

2011-03-18T09:34:00.001-07:00

After Ben’s party, I knew I was going to hit the ground running with GS and Wine Opener fundraising. This is my first year throwing myself into fundraising and the planning committee and it’s been going well.
Tuesday night and Thursday afternoon, I attended the opening of the new BJ’s Brewhouse restaurant in Arden Fair Mall. The CEO of BJ’s daughter has CF and they have always been actively involved in fundraising. For their grand opening week, BJ’s is giving 100% of proceeds to the CFF! People aren’t charged for their meal, they are only asked to donate. This is such a great opportunity to raise money for the CF Sacramento chapter and to raise awareness for CF.
All week we have a CF table set up near the front with flyers on our upcoming events, answers to questions about CF, a raffle and just tons of info. We thanked patrons as they walked out and put flyers on the tables.

I brought in a picture of Ben just to help give CF a face. It was also great to met another CF mom from our chapter.
I also realized that you have to be thick-skinned when you go out, publically fundraising because people can be downright rude. But I just let it roll off my back and was grateful to spend the day fundraising for my Little Man.
I have also decided to make Ben’s Brigade (our Great Strides Team) a national team. This means that our family and friends can walk under Ben’s Brigade in different cities during GS and all money they raise goes directly to our team. I’ve already set it up for Santa Rosa (Aunt Regina ) and for San Francisco. If anyone else is interested in walking in their local GS for Ben, please let me know.We love to have as many people as possible!
Committing to be a national team also means that I am committing to raising a greater amount of money. Last year, my goal was $5,000 and we were able to raise almost $6,500 so we did GREAT in my opinion. I have decided to set our team goal at $10,000 (gulp) this year. This was a big decision because I am not going to commit to a number that is impossible to reach. With a higher number like this, I’m going to have to go after corporate sponsors. Our director is giving me tips on approaching corporations and what to ask for. Of course, all of our walkers can also go out and raise as much money as possible too.
Working together, I know we can reach our goal!
So, if you’ve been wondering where I’ve been lately, I’ve been running after a VERY active two-year-old, keeping a clean house and committing a great deal of my time to the CF chapter. I have never been a part of something so fulfilling.

2

2011-03-15T08:44:00.001-07:00

Phew, I’m finally getting around to writing about B’s second Birthday. What a crazy, fun-filled weekend we had!

Friday started out by letting Ben eat what he wanted all day. What does a 2-year-old choose to eat on his day of birth?

Breakfast- fruit snacks and chocolate milk

Lunch- Jamba Juice

Snack- fruit snacks!

Dinner- more fruit snacks (seriously), milk, chips and a couple bits of quesadilla (I had to get something in him)

The rest of the day was spent running errands and getting things together. Our parents and Ben’s god mom arrived Friday night and the celebrating began.

Saturday was the big day and I woke up to clouds. The whole party was planned for outdoors and I did not have a back up plan. Luckily, they went away pretty early and we had gorgeous weather the rest of the day.

Everyone pitched in and started the food, set up tables and monitored the blowing up of the bounce house.

Ben had the bounce house to himself for twenty minutes and just bounced his little heart out. He was already exhausted by the time his friends got there!

The kids got to play in the bounce house, play structure and with all Ben’s outdoor toys we brought out.

My parents and in-laws managed the BBQ and brought out the most delicious Tri-tip sandwiches. Yum! That was followed up by cake and an appearance by our own personal Woody.

Woody was courtesy of Ben’s grandma. There’s nothing he wouldn’t do for his grandson!

I can honestly say, we couldn’t have asked for a better day. The weather was gorgeous, Ben didn’t get sick, no friends had to miss due to illness, the food was delish and people really pitched in to help. Like I said before, we view Ben’s birthday as a time to celebrate getting through another year and to thank every one for their support and loving our little man like we do. Thank you!

This was the only decent picture I could get of Ben. He refused to sit still or smile. He was just too excited!

Clinic visit

2011-03-10T19:39:00.001-08:00

In the middle of all the craziness, we were able to fit in a clinic visit (as if it’s an option).

However, we couldn’t have asked for a better day. Ben did great on the hour and a half ride down, pushed his cars around on the patient table, and waved good bye to everyone as we left.

He is a little over 33 lbs which keeps him above the 90th percentile and is half an inch below 3 feet which is just above the 80th percentile. Of course, with numbers like that I have no room to complain and I did a little happy dance on our way to the room. I can’t take all the credit though, Ben is a physical clone of his father at the same age.

Ben’s lungs sounded crystal clear and he was also able to demonstrate how he can cough on his own for our NP. He is such a stud.

We made a few changes to Ben’s regiment. We upped his enzymes from 3 Creon 12’s to 4 Creon 12’s and if you’re at all familiar with CF or you read this blog, you’ll know the reason why. I don’t need to go into gory details.

We were going to start our second month of Tobi for treatment of his pseudomonas but I decided to switch him to Cayston for the last month. Cayston is a fairly new inhaled med that also treats pseudomonas. If Ben had continued to culture pseudo after our IV treatment of it (August ‘10), he would have been started on Cayston.

I’ve done some research on it the last couple weeks and have heard nothing but positive things so Dr.N agreed that it was a good idea to start. We also did 6 months on/off of Tobi last year and never kicked pseudo so I think it’s time to make a change. We’ll have a couple days break before our new prescription arrives.

TOMORROW Ben turns two. Maybe he’ll start holding his own nebs now.

Sleep issues, fundraising, bday party planning, oh my!

2011-03-08T20:38:00.001-08:00

Well, my lack of posts should give away how busy we’ve been around here.

Ben’s sleep issues are 100% better. He was going through some major separation anxiety especially from Daddy. He was anxious as we were heading up the stairs for bed and couldn’t even concentrate through stories. After reassuring him several times how much we love him, how we are just outside and pointing out that the door will remain open so he can easy get to us, seems to have alleviated the problem. He’s less anxious around bedtime but is still overly attached to d-a-d-d-y which isn’t a bad thing. I don’t blame the kid, Ryan is pretty cool!

Our fundraising for the CF wine opener has been going well and I can’t thank people enough for all their contributions. We are still selling tickets and if you’d like to purchase them click HERE. Even if you can’t attend the event, you can still purchase tickets and help raise money for the CFF.

I have been ahead in my party planning and am almost ready to go. I purchased Ben’s Toy Story party supplies from Party City and was delighted to see that they are sponsoring the CFF this month and you make a donation that goes to directly toward research. If you’re in need of party supplies, head on over there to support all those living with CF.

Besides a Costco trip on Friday, we are pretty much set. The Toy Story bounce house and popcorn machine should arrive on time and I keep praying (everyday) that we have decent weather. Because we have no Plan B

Up

2011-03-05T18:02:00.001-08:00

Things are starting to look up around here!

Ryan and I knew we needed to change something with Ben to get him back to sleeping on his own. So, yesterday we went and picked out a sleeping bag to help get him excited about sleeping on his own.

He passed up the Toy Story sleeping bag for his beloved Lightning McQueen. Of course, Ryan and I played it up, getting super excited and babbling on about how cool he’s going to look in his new sleeping bag (the people at Toys’r’us must have thought we were nuts!).

We put him to bed a bit later then usual, partly due to the fact that he took an extra long nap, and partly due to the fact that we were anxious with how it would go.

Well, a Lightning McQueen sleeping bad didn’t work. So we changed it up again, and rearranged his room.

Do you see the feet? I was trying to get him to smile but he decided to play hide-n-seek instead

Looks like a new layout and keeping the door open have done the trick. For now. Fingers crossed.

7 days

2011-03-04T09:28:00.001-08:00

There are still 7 days until Ben officially turns two, but the terrible two’s have been in full swing the last couple days.

Hitting
Tantrums
Refusing to do night nebs
Running away when you ask him to come
Refusal to sleep by himself
Excessive whining

Sound exhausting? It is! While I know it’s completely normal, he has run me ragged. Time outs have been bountiful.

Screams when I put him down for his nap or bedtime. I let him cry it out in his room for a minute only to walk in and find him sitting on top of his dresser/changing table. So, leaving him alone in his room is now dangerous.

After having to lay in bed with him for a half an hour last night, I found myself googling toddler sleep issues only to find it could be a ton of things. Mostly just a phase. So Ryan and I think he needs a change or distraction. We’re going to either buy him a toddler bed or a new stuffed animal to sleep with and hope that helps because I really miss my “hubby time” at night.

The moral of the story is don’t be alarmed if you see me with circles under my eyes or I bite your head off. It’s been stressful lately. But we are SO looking forward to Ben’s bday next weekend!

The Jacket of Torture

2011-03-01T09:34:00.001-08:00

We have a new “game” in our house as of lately. Whenever I get out Ben’s vest to start treatments, I unhook it and try to put the jacket on before I hook the hoses. The last couple times Ben has thought this is hilarious and has started running from me. Typical 2-year-old boy huh? LOL.

So, I’ve decided to go with it. For 10 minutes he runs around the house avoiding “the jacket of torture” as I call it. Torture because it means he has to sit still for a half an hour. A hard task for this guy lately.

But I’ve found that chasing after him before hand is a good thing. He burns any last little bit (ha!) of energy before having to sit. It gets his lungs open and him breathing deep which is good way to start off treatments, letting the medicine get in deep. And, we try to put a positive spin on treatments. We’ll see how long we can keep this up.

~ Thank you to all who have volunteered services or goods to our wine auction. We were in need of more donations and people have really stepped up. Thank you! If you’d like to purchase tickets to the wine tasting/beer tasting/food eating/auction winning/helping Ben event, click HERE!

~ Ben’s birthday is in 10 days and his birthday party is in 11! Gulp.

~ We have our CF clinic appointment on the ninth. We won’t be reculturing Ben because we are still in our Tobi cycle and have doubt that things have changed. I’ll take him in mid-April to be recultured and to figure out the next steps.

Low-key

2011-02-25T13:24:00.001-08:00

Low-key is the theme of the day around here. The weather is nasty and cold. It’s the kind of day where I take a shower and get back into PJ’s. Little Man still hasn’t left his.

We are hanging out, playing with puzzles and watching movies.

Some people took the low-key theme seriously.

You can’t tell from the picture but Ben’s vest is on and loud. This is only the second time he’s fallen asleep while it’s been on. I didn’t have the heart to wake him or remove the jacket, so I unplugged the tubes and let him snooze.

I even joined him with a nap for myself. It’s hard not to enjoy days like this.

GS meeting

2011-02-23T09:15:00.001-08:00

This year I’ve been asked to be on our Great Strides planning committee for the Sacramento chapter and I am so excited! I feel like I’m finally in a stable emotional place to participate. The first year, Ben was only two months old and we were fresh off a 3-week hospital stay. I was lucky my hair was brushed let alone able to make the walk. Last year, I knew what to expect and was more prepared. Well, this year is going to be the kick off year of many great walks to come!

I attended our first meeting last night and was excited to learn that I was the 7th top walker (out of roughly 800) earning almost $3,000 towards my personal goal. Even better, our team, Ben’s Brigade, came in 5th (out of 65) earning almost $6,000!!! Woohoo!! It’s all thanks to you and the power of networking! All walkers on BB donated and worked at getting other donations. We are in this years pamphlet and I couldn’t be more thrilled. I already have one saved to show Ben. I can’t wait til he’s older and I can show him how much people loved and supported him. Seeing those results are just what I needed to get me even more fired up for this year!

We talked about many things and I came to realize, A LOT goes into planning GS. We have a coordinator through the CFF and 4 other moms to help out. I got lots of great ideas on how to raise money for our team besides asking people to just donate. My goal is to always make the “Top 10 walkers/teams” every year from here on out. I have a couple tasks which include walking into Kohls department store, talking to the manager and asking them to have some employees donate their time and volunteer during the walk. Five years ago, I would have been mortified to do this but since I’m walking in and asking them to support Ben, I couldn’t be more confident.

This year, I’m going to be making a banner for our team that we can use every year. I’m also going to start getting donations for our raffle. If anybody in the Sacramento area (or anywhere!) has items or services to donate to the raffle, we’d appreciate it! Ryan is going to try and get some of his Dentists to donate whitening services, which would be huge.

As you can tell, I’m really excited about everything this year. It feels good to be behind the scenes more and get involved. I’m also working on recruiting people for their wine tasting event, Spring for a cure, that will be held in Folsom in April. If you are interested in the event, click on the link to register.

Lots more details to come!!

Sicky

2011-02-21T11:03:00.001-08:00

I can’t believe that February is almost over! Where did the time go? Before I know it, I’ll be in Minnesota throwing back a glass of champagne with Jen. I am so looking forward to meeting her and taking a mini-vacation with Ryan. I have a feeling her wedding will be here before we know it.

This weekend was low-key. Ben woke up Saturday with a fever, the highest he’s ever had (103). But it went down with Tylenol and Ibuprofen so I wasn’t too worried. He got to lounge around and eat popsicles all day so he was pretty content. I’m fairly certain we picked it up from one of our playgroup friends but after a day, he was fine. He hasn’t had a fever since Saturday so I’m happy to say, we’re outta the woods.

The only bummer was that we missed our first birthday party of the season due to his fever. His energy and appetite were fine, I just felt it was too soon to take him around other kids. Thankfully, we’ll be back to all our normal activities this week!

My activities this week include shopping for Ben’s Toy Story party. I don’t want to leave things til the last minute so I’m starting now.

Ben is continuing to handle his treatments like a stud. I am so thankful for his positive, easy going attitude. It looks like he may also need a haircut before his party too….

The many faces of misbehavior

2011-02-17T18:44:00.001-08:00

This is what my sons face looks like when he's doing things he shouldn't. Things he knows he shouldn't be doing. Like splashing and throwing his cars around.

Instead of disciplining, I laughed and grabbed my camera. I'm sure I'll pay for it during tomorrows bath.

Slacker

2011-02-15T19:25:00.001-08:00

I feel like I’ve been a slacker on posts this month. We’ve just been busy!

Ben’s Tobi treatments are going fabulous. It’s like he sensed my anxiety about them and is doing his best to cooperate. It’s been so easy, something I’m very thankful for!

We are gearing up for Ben’s second birthday (March 12th) and I am super excited for it. We will have a bounce house, popcorn machine, piñata and barbeque. Plus, multiple Toy Story themed events! I know some families do birthday parties every other year but I can see us going all out for Ben’s. It’s a time for us to celebrate Ben being healthy and taking CF by the horns. It’s a time to pat each other on the backs, knowing we made it through another year. In the 1950’s children with CF were lucky to live to see their fifth birthday. Every year is something to celebrate!

I’m sure there will be a bit of mixed emotions. My baby is growing up, something I am thankful for but sad to see. This weekend I realized he’s too tall for his pack n play so I ordered him a kid-sized blow up bed. No more cribs for this guy! My “little” Man is growing up!

Just what the doctor ordered.

2011-02-12T19:50:00.001-08:00

A trip away was just what the doctor ordered. Ben’s cough has vastly improved, it’s almost gone. He’s been running around outside, chasing the dogs, playing with his Carmel toys and LOVING the Aquarium.

Usually he runs around pointing out different exhibits, but today, he actually stopped and stared at the tanks. Never mind the fact that it was the Finding Nemo tank (our current favorite movie), he actually took the time to look around, not just blowing past each tank.

We spent two hours at the Aquarium, enjoying all it has to offer.

He had to line up the giant blocks. Like he does with his cars, chairs, and pretty much, anything else he can get his hands on.

Ben was on his best behavior all morning. He even wore the apron that keeps his clothes dry.

We couldn’t have asked for better weather. Or a better day.

Some fresh air

2011-02-10T11:20:00.001-08:00

Ryan left us this morning for a 4-day business trip. He usually doesn’t like me saying he’s going to be gone because it leaves Ben and I vulnerable (in the vicious suburb that is Folsom ) but since Ben and I are gettin’ outta dodge, I thought it’d be safe to tell you.

Manny and I are headed down to my parents for the weekend. I thought some fresh air and a change of pace would be good for both of us. While traveling with Ben isn’t light, I don’t want CF/medical equipment to stop us from doing activities. Of course, we’ll go to the Aquarium, the park, and visit friends/family. Perhaps some salty air will help clear out Ben’s lungs and nose.

He still has a wet cough and a crusty nose but they seem to be improving. I don’t expect his cough to go away for awhile, Tobi can often make a cough worse before it gets better. He’s been doing fabulous with his Tobi treatments, something I am VERY thankful for. He is such a stud, who continues to amaze me with all he endures.

I’ll leave you with a picture that best describes his “helpfulness” lately.

Sunny

2011-02-08T19:31:00.001-08:00

It’s sunny around here.

The weather has been beautiful (mid-70’s) and Ben has been a lot better.

Still a wet cough but we finally have our Tobi to start treatments. I teeter between being happy we have it and feeling sad. I’m thankful there are meds to treat the pseudo but am sad we are here. I wanted to hug the UPS man then flip him off. I’m sure my other CF moms know what I mean.

So, our Tobi is now nestled on our top refrigerator shelf, between Ben’s Pulmozyme and a six pack of Corona.

Blah

2011-02-05T16:34:00.001-08:00

Ben’s cough has gotten worse today. It has slowly turned wet throughout the day.

We started Cipro yesterday but Ben HATES it and I don’t blame him. It’s like watered down chalk, not a good texture. It took both Ryan and myself to get it in him this morning and a few seconds after, he threw up. So, we are stopping the Cipro and have started Bactrim.

Luckily, our NP gave me her cell number and I got in touch with her this afternoon. We’ll be seen Monday morning to make sure nothing worse is going on.

I just want to start Tobi and get the Little Man better.

So, blah is how I feel today. While I only got one decent dose of Cipro in Ben, it’s already done a number on his tummy so we’ve had to change at least 6 diapers already today.

The good news is that his energy and appetite are good so the smile on his face always brings a smile to mine.

The waiting game

2011-02-03T19:18:00.001-08:00

I was expecting Ben’s Tobramycin prescription to arrive today but unfortunately, due to the massive storm in the Midwest, the pharmacy wasn’t able to get it out to us. We have to wait until next week to even start.

I’m super bummed because it just delays us starting our two month cycle. Ben’s cough is getting worse and he’s in a bit of a bad mood. I’m not sure if this is attributed to the pseudo or something else but I’m even more eager to start. I begged the pharmacist, asking her to send it earlier, but she said there’s no way and we can only get the medicine from a few select pharmacies, mostly located in the Midwest.

I even called our clinic hoping they’d have a sample for us to start with through the regular nebulizer, but nope. This means that we’ll start our new treatments the day before Ryan leaves for a business trip for 5 days. I will be doing them all by myself, added time included, for 5 days straight.

Our NP is talking to Dr. N about possibly starting him on Cipro just because I feel something needs to start. But then again, I don’t want him to take antibiotics if it’s really not going to help. The whole thing just makes me anxious.

Sigh. I’m trying my best to stay positive but I’m having a really, really, hard time.

The Plan

2011-02-01T16:13:00.001-08:00

Wow, you guys are awesome. I have received so many comments of love and concern. I DO realize that culturing pseudomonas is minimal compared to some other CFer’s especially, Skye, Logan, who is being admitted tonight for his g-tube, and of course, Conner. But it was a hard day for me and I appreciate everyone joining me in the trenches.

I knew it was not going to be good news before our NP even called me. I had called her early yesterday morning, eager for the the results. When I hadn’t heard from her by noon, I knew what was coming. Our NP is awesome. She wouldn’t call me just to tell me the results. She wanted to have “the plan” figured out. Of course that meant she’d have to talk to Dr. N before she called to tell me.

That’s exactly what I got. She gave me a moment to sob into the phone before telling me that we were going to start a 2-month straight Tobi cycle through the eFlow nebulizer. This will help cut down Ben’s treatment time especially since he does Tobi after his vest. Dr. N believes Ben kicked pseudo the first time, he just unfortunately, picked it up again. Therefore, we are starting out on Tobi again. I don’t know what the long term plan is (IVs, Cayston) and I’m not trying to figure it out now. We’ll just take it one day at a time. Ben will not start Cipro (an oral antibiotic), like some CFer’s who culture pseudo, because he says there’s no significant research to back up the fact that it helps. However, if he cultures it two months in a row, I’ll request we start it. Can’t hurt.

The pseudomonas growth in Ben’s culture is “minimal” compared to the “moderate” growth he had when we entered the hospital in Aug ‘09. There is a good chance he can kick it with Tobi since we caught it so early. I am so thankful I am in tune with Ben, and picked up on the signs.

I think the hardest thing for me, is that I finally felt like we were “ahead” of CF for the first time EVER. Ben has yet to have a cold this winter and I thought that we could make it through with little to no sicknesses. I have been extra vigilant with hand washing, treatments, not going around sickies, cutting down on time around other kids, even getting extra vitamins in. But clearly, I can not protect him from everything. The results were like a slap in the face, that I can not control everything and that CF has the upper hand. This too shall pass though, and in a few days I’ll be back to myself.

Like I said before, I can’t thank people enough for their encouragement. The CF community is there for us when I need them and that makes a world of difference. Of course, the smile on this little guys face, during his impromptu play date yesterday, keeps me going as well.

(please excuse, the mashed up animal cracker in his mouth )

Culture Results

2011-01-31T15:35:00.001-08:00

While we haven’t had so much as a cold this winter, we couldn’t avoid everything. Pseudomonas is back.

Too quiet

2011-01-30T16:55:00.001-08:00

I took a peek into Ben’s room because it was too quiet. We all know that kind of quiet. The kind where you’re sure your child is doing something they shouldn’t. To my surprise, (and delight!) I found Ben reading.

(I’m ignoring the fact that my little Einstein has the book upside down)

I just love his little smile.

Culture update

2011-01-29T08:59:00.001-08:00

Unfortunately, Ben’s culture was not ready as of yesterday. That means, I have to wait until Monday to see if there’s anything growing. We are no longer given preliminary results after our last “pseudo fake out”. While the wait through the weekend stinks, the fact that Ben’s cough continues to improve, keeps me going.

RespirTech was mortified and apologetic over the fact that the brand new vest they sent us had a hole. They have overnighted a new (black!) one to us and am asking that I put the old-new one in the box to return. They will take up the issue with their manufacturer. They seemed more upset about the hole then I was! At least they have wonderful customer care.

We were supposed to go out of town for to celebrate Ryan’s grandpas 94th (can you believe it?!) birthday but another family member became sick so we decide it was best for Manny and I to stay behind. Looks like we have a weekend full of movies and PJ’s. The weather is cold and dreary and I can’t think of a better way to spend it with my little man.

Because there haven’t been any new pics of Ben in awhile, I’ll leave you with one.

Sharing his snacks with his pillow pet and yes, we are still wearing our Christmas PJ’s!

A question…

2011-01-27T15:13:00.001-08:00

Well, in good news, it looks like Little Man’s cough is starting to subside. This really makes me happy to see and hear. While I’m not convinced there’s nothing going on, it is good to see it going away. I’ll call in tomorrow to see if his culture results are in.

And now, I have a question for you. I ordered Ben the next vest size up. He now wears a RespirTech size 24. I decided to order him the new blue vest that I had been told about at CF Education night.. It came in a timely fashion however, I was disappointed to see it already had a hole in it. It split at the seams, not a good thing for a vest that fills with air. Ryan also seems to think the blue is too “girly”. So, I have to ask….

is it too girly? I may just ask them to send us the standard black. Maybe the hole was a blessing. A blessing that my son doesn’t have to feel “girly” while doing treatments.

Hello, again

2011-01-25T16:04:00.001-08:00

Today, we said hello to our Pleasanton clinic. Friday night, Ben had a low grade fever. It went away by Saturday morning but was soon followed by a dry cough. Well, that cough has gotten worse as of yesterday so we headed on in today for a culture.

Our clinic does not just give out antibiotics. They want to see him, listen to his breathing and do a culture to find out if anything is growing in his little lungs. This is a GOOD thing. Too often I see CFer’s getting handed antibiotic after antibiotic without going into further detail or examination. This is not necessarily good for a couple reasons. One, different bacteria requires different antibiotics. If you don’t know what’s growing in our little CFer’s lungs, how can you properly treat it? Two, I don’t want Ben being filled with unnecessary antibiotics that aren’t treating the problem. Three, I don’t want Ben growing resistant to antibiotics. He’s going to be taking them throughout his life and the last thing we need is for him to build up a resistance to certain ones. Four, you don’t want antibiotics covering up a bigger problem that may be going on. They may treat the symptoms but not the overall problem.

I have a refill on Bactrim for emergency cases such as, we’re out of town or it’s a holiday weekend.Our clinic trusts me enough to know the signs of possibly needing it. However, we haven’t had to use it yet because I like to give Ben a couple days to get over the cough himself.

While being in the car for three hours and missing our Gymboree class is not fun, I am thankful our clinic handles Ben’s care this way. Once again, Ben receives the best care because I refuse to settle for anything less.

Now we just keep our fingers crossed for clean results or results that can be treated with oral antibiotics. I am not letting the dreaded p-word enter my vocabulary just yet.

Bloggy friend

2011-01-24T08:15:00.001-08:00

I just wanted to ask you guys to pass on some blog love to my dear friend Cassie. I have known Cassie for many years as we grew up in the same town and our moms worked together. Months ago, Cassie’s daughter was prenatally diagnosed with Down Syndrome.

Having gone through my own prenatal diagnosis, I reached out to Cass to let her know I had some what of an idea where she was coming from. I encouraged her to start a blog because I know it can be healing on so many levels. But most importantly, it let’s you know you’re not alone. I am SO thankful for all the CF mom’s I’ve met online and I hoped the same thing for Cassie.

Now that Audri is a few months old, she was able to get one up and going and I’d love for you to stop by and show her some love.

http://audribeth.blogspot.com/

Her story is incredible and Audriana is just the cutest little thing. Thanks readers!

TT {Part II}

2011-01-22T14:26:00.001-08:00

I just wanted to thank a sweet anonymous reader for saying they were thankful for my blog. It so nice to hear this once in awhile and I’m glad to know people are actually reading this!

When I started this blog, I didn’t think too many people would read it. While I wanted to keep a handful of family members up-to-date on Ben’s CF, I started it mostly for the little man. Not only did I want to keep an online scrapbook, but I wanted Ben to know that I struggled with his diagnosis as he (probably) will in the future. I am human, I make mistakes but I did my best to love and raise him to be a productive member of society.

Life with a chronic illness is no picnic. In fact, it downright sucks. I’m not going to sit here and blow sunshine up your skirt. But I do believe if you stare at the negative too long, you lose sight of the positive. A week after we found out about Ben’s CF, my dad sent me this quote:

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." -Helen Keller

Though I’ve struggled with Ben’s diagnosis, I have also come to appreciate life so much more. More then most people I’m sure.

As Ryan and I continue to think/discuss/pray about baby #2, I hope to be open and honest. This blog is my voice, where I make no excuses for who I am or what I write.

Thank you for following our journey.

Thankful Thursday

2011-01-20T14:44:00.001-08:00

I decided to participate in Ronnie’s Thankful Thursday this week.

I am thankful my little man seems to be feeling better. We had about three weeks where he was just a little pistol, in pain from teething. All he wanted was his pacifier and lovies to snuggle with. I am thankful he has almost all of his teeth and is in better spirits.

I am also thankful his first dentist visit went well last week. The doctor confirmed he had multiple teeth coming in but everything looked great and right on track.

This was the only picture I got of Ben while there. I’d hope to get one of him in the dentist chair, looking like a big boy. However, I found myself in the dentist chair, holding him down while the dentist tried to look in his mouth without getting bit.

I am thankful we have started work on our backyard in preparation for the spring. This is the first time Ben has had a backyard and he deserves every square inch. Just another place for him to run and play.

What are you thankful for?

Snow Day

2011-01-19T08:49:00.001-08:00

My post of our weekend is long overdue! In my defense, last night was date night so I was out enjoying my hubby!

This weekend, we went up to Soda Springs to my great aunt and uncles cabin. We had an absolute blast. Christmas 2009, Ben hated the snow. He sat down in it, whining and acting like a priss who didn’t want to get dirty. Well, this year, he couldn’t have had a better time!

By far, his favorite activity was throwing snow (throwing it at me was even more fun!).

He refused to wear his gloves but didn’t seem to be bothered by the cold. So I let him play until his fingers practically fell off

What else could complete this little guys trip? A model train of course!

Ben was in heaven. There was even a train whistle button, he pushed repeatedly. I have to say, it was a great weekend. Ben lungs did great, we always worry a bit, taking him up to such high altitude. But he was a champ, doing his treatments even when he wanted to be playing outside.

Hope everyone else had a good weekend. I can’t believe it’s already Wednesday!

The countdown to Ben’s 2nd birthday starts now!!

CF education night

2011-01-16T16:42:00.001-08:00

Phew! I had a bit of a blogging break this weekend because we took Ben up to the snow. We had an absolute blast! Ryan got to snowboard, I got to read more Sookie books ( ) and Ben had a blast throwing snowballs. Pictures to come tomorrow.

First, I wanted to talk about the CF education night I went to on Thursday. It was put on by the Sutter Hospital CF clinic. This was the clinic we were originally assigned to but then ended up switching to UCSF when we moved to Santa Rosa. I have some experience with them because Ben was born in Sac and was hospitalized for 20 days due to MI. During this time, the Sutter team oversaw his care.

I have to say, I have heard great things about their NP. I have also heard not-so-good things about their Pulmonologist. This is why we have stuck with UCSF despite this clinic being only 25 minutes away.

However, they put on a great CF education night and it was so wonderful to meet some of the local CF mom’s I’ve come to know on Facebook. I also wanted to share some tips/info I learned while there. A genetic counselor, NP, Pulm doctor, and GI doc all spoke. Please keep in mind, this is the opinion of one CF accredited clinic so take it as you will. There is a lot of info so I’m not going to go into specifics because most CFers/CF caregivers know what I’m talking about. I apologize if it’s a bit random, there was a ton of info given out!

1. Hypertonic Saline. The doctors and nurses who spoke, couldn’t stress enough how important they thought HTS is. In their opinion, everyone should be on it. It hydrates the mucus and makes it easier for CFer’s to cough it up. Even if you or your child don’t sound mucus-y, once they start HTS, they will cough phlegm up. Highly recommend for EVEYBODY!

2. Vitamin D- During the winter months, when kids get less sun, they recommend 2,000 IU daily at the least.

3. Vertex drug trials. There have been “game changing” results in VX-770. This is the drug targeted at the G551D mutation. This drug has had extremely promising results and is the ONLY drug to actually reduce the amount of sweat chloride in CFer’s. Therefore, fixing the underline problem in CF. There have not been as promising results in the VX- 809 study. HOWEVER, it is only in Phase II and many people believe the right combo of the 809 drug and the 770 drug will show just as promising results. Extremely hard to hear but I’m glad to have an update.

4. PPI’s and C. diff/pneumonia. There are some studies that show a correlation between Proton Pump Inhibitor (Prevacid, Prilosec) use and C.diff and pneumonia. PPI’s may have a slight effect of increased community acquired pneumonia or clostridium difficle diarrhea. However, all the doctors agree that the benefits of PPI’s outweigh the risks.

5. RespirTech vest users: I spoke with the RespirTech rep and he was very impressed with the fact that Ben is at 100% pressure on his vest. He recommends that every child be at 100%. You can slowly work up to it or just jump up, depending on your child. He says 100% is absolute best for adults and kids. They also now offer vests in pink and blue, you just need to call and ask them to ship you one.

6. If your clinic doesn’t start testing for Cystic Fibrosis related diabetes by the age of 10, you should ask to start. It should be done annually.

7. Pseudomonas. The Pulmonology doctor recommends that even CFer’s with colonized pseudomonas be treated with an on/off cycle of TOBI for the rest of their lives. He also recommends a Cayston/TOBI/Cayston/TOBI…. sequence to see if it helps in clearing pseudo.

8. Azithromycin is recommended in kids 6 years and up to help with anti-inflammatory. It can also help increase lung function. Ibuprofen can also help however, the levels need to be monitored. You shouldn’t just start taking Ibuprofen everyday. Your clinic will help you figure out the right levels for each person.

As I said before, please talk to your clinic before you change your/your childs regime. Please feel free to email me if you have any questions.

Addictions

2011-01-12T17:44:00.001-08:00

There are good and bad addictions going on in our house.

Besides my love affair for my Sookie Stackhouse books, I’ve taken up a new habit. One I haven’t been into before.

Soda. Ugh.

I have never been a soda drinker beyond a sprite here and there. But lately, I’ve found myself drinking them more and more to put some spring into my step. I don’t drink diet either because the artificial sugar gives me headaches. Nope, I’m fully addicted to the “fat coke.” I’m going to attempt to wean myself with some sweet tea from Trader Joes but I’m not sure how it’s going to work. I even find myself craving them. Ugh.

However, there are some good habits going on too! I’m proud to report, my little man is into a good habit. Two days ago, we visited a friend who introduced us to Ella’s Kitchen Organic squeezable food. Ben gobbled it up so I decided to head on over to Babies ‘r’ us to try some different flavors to see which ones he likes. I had hoped he would like the vegetable ones, especially the spinach, apples and rutabaga mix. ~~I had hoped some veggies with his dinner would counteract the milkshake/fry combo we had for lunch.~~

Now, Ben doesn’t like veggies (besides peas and he only eats them for my mom) when they’re placed on his plate. Who really does? But this is a fun way he can get his veggies and even walk around doing it! Besides an initial puss-face (hadn’t tasted anything like that in awhile, ha!) he sucked the entire thing down. My next attempt is the sweet potatoes, pumpkin, apple, blueberry mix.

You can check out their many products HERE. I’m glad one of us has a good habit going on!

What’s that?

2011-01-10T16:25:00.001-08:00

“What that?”, “What that?”, “What that?!”,

This is what I heard when I was putting away dishes in the kitchen. I came around to see what Ben was talking about. He pointed to something on his raceway.

I had to bend down to see what he was pointing to. I laughed out loud when I saw it- french fries on the pretend drive-through sign. Looks like it’s time to slow our roll on the McDonald’s french fries, even if they are good calories!

At least one

2011-01-09T21:09:00.001-08:00

At least I’m keeping up with one of my New Years resolutions up-turning off the TV or less “screen time”.

I admit, I’m a die hard True Blood fan ( I know, I know, but it’s the ONLY vampire show I watch, I swear). I’m even classified as a “fangbanger” online. I wear that title proudly.

I have gotten into the Southern Vampire Mysteries, the Sookie Stackhouse books. I admit, I wish it was something more profound like, How to raise the next President, but after all the energy I expel with Ben all day, it’s a mindless read that I enjoy.

My husband is such a sweetheart that he went to REI and bought Ben and I gloves to wear during our walk. I guess I have NO excuse to not get out now. I think that’s a good thing

Why?

2011-01-07T23:19:00.001-08:00

I thought my New Years resolution was a good one. I wanted to get out and exercise. To give Ben some fresh air, and new sights.

But why did I have to do it during the coldest month of the year? It has not been over 43 degrees here, even during the day (I know Jen, I’m a wimp).

Yoga pants? Check

Leggings under yoga pants? Check

Knee high socks over leggings? Check.

T-shirt, sweater, jacket, mittens, scarf? Check

Ben, barely able to move, let alone see (all the new sights remember?) out of the mass of layers I put on him? Check.

Still freezing? Check!

At least I got some “quiet” time to myself. Ben has been literally climbing up the walls lately and it felt good to zone out on my ipod.

Mother Nature, please show me some mercy. I’m trying.

A solution

2011-01-06T19:03:00.001-08:00

A solution to my own question. Well, somewhat of a solution.

Over a year ago, Ben’s Papa & Nana (Ryan’s parents) gave him a talking bear, My Pal Scout from Leapfrog. Ben loved it but has slowly lost interest in it over time. Every once in awhile he’d play with it but not like he used to.

Well, I was racking my brain this morning for ideas that will help him sleep in his own crib during naptime. That’s when I spotted Scout.

Scout was perfect! It gave Ben something to concentrate on while I slipped outside. I had to laugh though, while I listened to fake burps (teaching kids manners), lots of “I love you, Benjamin” and singing coming through the monitor. At least it gave me an ~~afternoon~~ hour of quiet time. I even managed to slip in his room and pull it out of his crib while he was sleeping. Don’t want him rolling over on Scout and setting him off. As you can tell, nap time is highly coveted around here but I think, only by me. Let’s just hope it continues!

Thank you Nana & Papa!

Where did my good sleeper go?

2011-01-05T16:28:00.001-08:00

Ben has always been a great sleeper. While he’d prefer to spend his time playing with cars, he’s always been easy to put down, even as a baby. Since he was little, we’d put him in his crib, turn on music and say goodnight. Easy-peasy. Something I clearly took for granted.

Yesterday, he refused to nap. When I first told him it was time to nap, he had a melt down. Not like him. Yes, I have to tear him away from his toys but it usually means he gets to go upstairs, snuggle with “Bunns & Girafee” and his paci. So when I took him upstairs and put him in his crib he went into a fit and cried for 15 minutes.

After 15 minutes I could no longer leave him in there. It was breaking my heart to hear him cry especially since he hardly ever does. I took him into my room, snuggled up next to him and he was gone within 2 minutes. Of course, I was so comfy, I settled in for a nap too (I’m glad I don’t usually sleep with Ben, he’s a kicker!).

I figured it was a fluke or his teeth were hurting him. He’s in the middle of having 5 teeth come in. I can only imagine it’s painful even with all the remedies I’m giving him. Anyway, I thought it was a fluke. Until today. Same thing again. Meltdown. Cried for over thirty minutes this time. I was determined not to give in because I don’t want this to become routine. Ben’s nap time is my down town and I cherish it to say the least. However, I couldn’t let his cries go beyond a half an hour.

I know he’s tired because, once again, he fell asleep next to me within 2 minutes. Ugh. Do I have a permanent nap buddy? Of course, I feel asleep again! I was reading until I woke up when Ben did with my book smashed and drool coming out the side of my mouth.

Who wouldn’t want to snuggle with this cutie?! Any suggestions would be helpful!

An addition

2011-01-04T21:12:00.001-08:00

I’m making an addition to my New Year’s Resolution. I need to get out and exercise more. While I don’t struggle with weight issues (please don’t hate me) I need to get out and get fresh air. Plus, I need to dust off my super-expensive-but-it’s-so-big-it-barely-fits-in-my-trunk-therefore-I-never-take-it-anywhere stroller.

Before I know it, it’s going to be summer and WAY too hot for me to be walking around. I know Ben would really enjoy a fresh air walk, I just have to get my butt up and moving. Easier said then done.

I’m also passing on a prayer request for my friends, the Olimb family. Like us, Rachel and Jeremy didn’t know they were carriers until their three-week-old son, Asher, was diagnosed with CF over three years ago. Rachel gave birth to the family’s second son, Paxon, Christmas morning. Unfortunately, Pax was born with CF and a deletion on chromosome 4. He fought hard for 11 days but was called home today. You can read more about their sweet family here:

http://www.asherolimb.com/blog/

Rewind!

2011-01-03T11:44:00.001-08:00

The holidays blew by before I got to share Ryan’s special gift from Ben I decided to take Ben to Color Me Mine just after Thanksgiving. I was hoping he’d paint a piece of pottery for Ryan and my parents.

However, I wasn’t sure if Ben was at the appropriate age so I asked the women who worked there before we decided to attempt it.

We did attempt it and I’m pretty proud of how it came out. Ryan is the proud owner of his first “daddy mug” that Ben painted all by himself. I love giving gifts like these. Ones that have meaning to them. I know it’s a gift Ryan will cherish forever.

Day 2 of 2011

2011-01-02T14:36:00.001-08:00

We had a fabulous New Years in the Hughes house! However, it didn’t take part in our home, it was actually at a wedding in downtown Sacramento.

Ryan and I were lucky to have my girlfriend come up and stay with Ben over night. This gave Ryan and I a much needed night out of fun!

As you can probably tell, we had a blast. It was so good to catch up with our college friends and celebrate two friends getting married. Saturday and Sunday were spent ~~recuperating~~ hanging low.

Ryan and I came up with New Years resolutions/goals for our marriage and for myself. My goals for this year are to turn off the TV more and enjoy uninterrupted time with Ben. I can’t believe he’ll turn 2 in 2 months and I don’t know where the time has gone. I don’t want to look back and regret not spending enough time with him. It’s so easy to get so caught up in TV/internet/cell phones and I am completely guilty of it. I need to unplug myself sometimes and just enjoy my son.

I hope everyone had a great New Years too!

My first attempt

2010-12-30T20:47:00.001-08:00

My first attempt at Photoshop…

The original…

I know it’s not much but I’m getting there. What do you think?

A good New Years.

2010-12-29T14:00:00.001-08:00

I’m going to have a good New Years and it’s not even here yet. Why?

Ryan and I are going to a New Year’s Eve wedding and I have a brand-spankin’ new, sexy dress to wear. I will be surrounded by my friends as we ring in the new year.
I already have $400 raised towards my personal goal of $3,000 for Great Strides. It’s not even 2011. Thank you Kelly-Hughes family for your donations.
Ben’s culture came back CLEAR of any bacteria. Just normal respiratory fluids. His cough and clear, runny nose are gone. I have worked my butt off the past couple months to keep him healthy and it’s nice to see it’s paying off. But, it’s not all me. I also have to thank our family and friends for respecting our boundaries when it comes to Ben. If we keep this up, we can make 2011 Ben’s healthiest year yet!
I’m figuring out my new photo editing software, Adobe Photoshop. This was Ben’s gift to me and I’m so excited to learn all the ropes. Better pictures coming your way in 2011!

Coming up, my New Years resolution. Not too sure what it’s going to be yet but I’m working on it.

A Christmas Post

2010-12-27T18:26:00.001-08:00

Phew! It’s been a whirlwind around here. Let me start off by saying we had a blast with my family over Christmas. Everyone was great with Ben, sanitizing their hands before playing with him, staying out of his face, and playing on the beach with him. However, it was a LOT of people to have in a house and Ryan and I realized that next year we’ll be ready to spend Christmas in our own home.

Just to give you and idea of what a Christmas tree looks like with presents for 35 surrounding it…

Through those windows is the beach

…mind you, the pile was 2 1/2 feet deep.

Ben loved everything he received this year. We didn’t go too overboard with him because, quite frankly, we spoil him all year. He gets toys after clinic visits, when he’s sick or when I feel guilty so we tried to keep it low this year.

We are now back in Carmel enjoying some down time. Ryan worked his tail off all month long so he’s now able to spend some quality time with us. Of course, we hit up the Aquarium this morning but it was uber crowded especially with people who had a cough. I just can’t understand for the life of me, why people go out sick! It’s my biggest pet peeve. So, we decided to ditch the Aquarium and enjoy a stroll around the wharf.

Here are some fun Christmas pics for you:

Every year, ~~a neighbor~~ Santa comes to the house and hands out gifts to the kids. Ben was not too keen on him. Here he is, sizing Mr. C up. It didn’t go too well.

Everyone had a gift from Santa!

Ben enjoyed the beach so much. I thought he was going to hate the sand like he did in Hawaii, but nope. He threw rocks into the ocean for over 2 hours. My younger cousins were so helpful with Ben. It just warmed my heart to see them all playing together.

I hope everyone else had a fabulous Christmas!

Merry Christmas!!

2010-12-25T09:39:00.001-08:00

The Hughes Family wishes everyone a Merry Christmas 2010!!

PS- I am now blogging from my NEW COMPUTER!! My husband totally surprised me with a much needed new HP Pavilion computer!! Thanks babe!

Semi-Wordless Wednesday

2010-12-22T21:48:00.000-08:00

I'm in trouble!!

* My NP called yesterday to inform me our new RT (who I wasn't thrilled with in the first place) didn't take Ben's throat culture to the lab- he forgot. So we needed to come in for a new one.
Grrrrrr...... Luckily, we were able to stop by on our way down to Monterey.
However, I am thankful because Ben has developed a cough and I wanted them to listen to his lungs (completely clear) and this next culture will reveal if anything is growing. I won't know the results until Monday or later because our NP will no longer give me preliminary results after everything we went through last time.

Dovewood Court

2010-12-20T14:25:00.001-08:00

To say that Ben likes Christmas lights would be untrue. To say Ben loves Christmas lights would still be untrue. To say he’s utterly obsessed would be more like it. He even gets excited when he see’s lights that aren’t on!

In Orangevale, there’s a neighborhood that does extreme Christmas lights every year. The ladies from my playgroup let me in on this little secret a couple weeks ago, and last week Ryan and I decided to take Ben.

It’s been cold especially at night so we bundled up and walked around.

Pretty cool isn’t it?

One of my favorite pictures :)

Of course, our little man sniffed out the train display and wouldn’t leave til he pointed out all the parts (engine, tender, caboose).

We had a blast just walking around hanging out with our little man. I think we may try to squeeze in one last trip before Christmas.

There was a Thomas/Mickey display that Ben couldn’t get enough of.

New clinic visit

2010-12-17T20:44:00.001-08:00

Yesterday, we headed down to Pleasanton for our first, official 12-week CF appointment. We are trying this clinic out for the first time and will be meeting our new RT and seeing Dr. L again. We have dealt with Dr. L before and know she is wonderful, she’s just not our beloved Dr. N.

Turns out, she only popped her head in to say hi because I had little to no questions, Ben’s height and weight were so good, and his lungs were clear! At nearly 32 lbs, Ben is still well in the 90th percentile for weight. We can thank Ryan’s gene’s because Ben is a physical clone of his father as a child! As neither of us are tall, I never expected Ben to be either but he’s still rockin’ the charts at 88 centimeters, well into the 75th percentile. We are so thankful for how Ben is doing, this doesn’t go unnoticed by us!

We met our new RT and this is one of the negative sides of the new clinic. He has a lot of book training but no real personal experience (he told me this) but seemed eager to help us out, keep track of when we should be changing our nebs (every 6 months) and brought in a handful of free nebulizers and bubbles masks. We are lucky that we’ve never had to pay for nebulizers or masks because our clinic is so well stocked.

Our NP came in and was so excited to see Ben. Since Ben has been doing so well lately, I haven’t talked to her in awhile! We presented her with our Thank-you-for-a-healthy-2010! basket, filled with See’s candies that she promised to take to UCSF the next day.

We SO appreciate all our clinic does for us and we want to keep them fat and happy so when that magic pill comes out, we’ll be the first in line :) While some people may not count a 5-month battle with Pseudomonas and a 2-week hospital stay as “healthy”, after losing Conner and seeing the decline of Skye, I do.

Our NP listened to Ben’s lungs and said they sounded “crystal clear”, hallelujah!! She thought it was a great idea, us adding HTS back into his treatments as night in an attempt to keep Ben healthy this winter. Ben showed her how he can now cough on his own (it’s more like a huff) but she was impressed none the less, and was on her way, basket in hand.

We saw our nutritionist next and that was pretty easy too. Since Ben is doing so well all around, she said to keep doing what we are doing. She also said it was okay to add in Gummy Bear Vitamin C and D into Ben’s diet during the winter. I purchased some from GNC and am glad that Ben will be able to use them. I also read on Cystic Life about Coconut Water and the benefits it has. It’s something I’ll be adding into Ben’s diet during the summer to help keep him hydrated in place of Gatorade which has double the sugar. However, that’s a ways away and will be talking about it more in the upcoming months.

Even better is that Dr. N visits the Pleasanton clinic once a month and we will be able to see him then for our annual visits. We will see Dr. L for any illness related visits and I am totally happy with that. The new clinic shaves over an hour of drive time off, we don’t pay for the Bay Bridge ($4) nor for parking (usually $12), don’t have to deal with city traffic (can be AWFUL!), and don’t have to deal with a huge waiting room of sick kids. I’ll take it!

They took a culture at the end, before we left. This, I am a bit nervous about. In the last week Ben has developed a dry cough which could be caused by a number of things. The change in weather, starting HTS again, becoming sick or growing something in his lungs. I feel at peace though, I’ve done all I can to keep him healthy, short of putting him in a bubble. The results will be in next week.

Thank you to everyone who has kept Ben in their prayers. Please keep it up!

Meeting Mr. C

2010-12-15T09:53:00.001-08:00

We took Ben to meet Santa yesterday at our local mall. He did well with the Easter Bunny this year, waving at him and jumping in line, so I kind of expected the same thing.

However, our little man turned shy. He run up to him then away! We got him to sit on Santa’s lap but he wasn’t very comfortable.

Can you see him grabbing his shirt? He was so nervous, ha!

Tomorrow we head to Pleasanton for our clinic visit. This will be our first full visit at the new clinic so I have a TON of questions for our new Pulm. Keep Ben in your prayers for a clear culture!

What a ham!

2010-12-13T16:30:00.001-08:00

I just had to share this picture because it makes me laugh out loud!

He was running around the house and jumping on the couch while making this face. Pretty funny! Do you love his turtle neck onesie? I thought it was a bit dorky but it looks just adorable on him and will go perfectly with his Christmas outfit. Thanks mom!

My little rockstar also loves to turn the light switches he can reach, on and off. I spent half of my shower this morning, in darkness. Gotta love toddlers!

Hyper Sal

2010-12-12T13:16:00.001-08:00

Ben was put on Hypertonic Saline (HTS) early this year until we were admitted to the hospital in early August. Hyper Sal is similar to inhaling salt water and it can be hard on some people. When we were in the hospital, I saw how well Ben did taking the Pulmozyme versus the Hyper Sal so I asked to be switched.

Pulmozyme has been going pretty well. Of course, Manny has those days in which he fights his treatments but its significantly less then with the Hyper Sal. I had refilled his prescription of Hyper Sal before we were admitted so I’ve had a months worth of it sitting on our shelf. HTS has a long shelf life so I wasn’t too worried about it going bad.

Recently I have decided to add it back in at night in an effort to keep as healthy as can be during the winter/flu season. There are a lot of CFer’s not doing so well this time of year and I am VERY thankful that we haven’t been hit too hard *knock on wood*. I have been more careful about bringing Ben around large groups and have been even more diligent with hand washing and disinfecting.

The first night we started back with the HTS Ben coughed a lot. Coughing is a good thing. Coughing means mucus and other respiratory gunk is being moved up and out. But as the days have gone on, he coughs less and less and I hope to make it through the winter with little to no illnesses.

Vertex drugs

2010-12-10T12:36:00.001-08:00

You’ve heard me talk about the Vertex drugs (VX-770, VX-809) and how these drugs would ~~help~~ change Ben’s life. They would allow him to lead a more “normal” life. I came across a video that really describes the basic defect of CF (something I still don’t fully understand) and how the Vertex drugs will work.

It’s a great video to help you understand better what we’re fighting for. The Vertex drugs are just some of the drugs in the CFF’s drug development pipeline that will hopefully be available to CFer’s in the future. By walking and donating in Great Strides 2011, YOU contribute to these new drugs.

It may be a bit early but please mark your calender for GS 2011 ~ Ben’s Brigade, May 21, 2011. Do not wait for a personal invite for us, join now! You can sign up by clicking the widget on the top left hand corner of my blog. Thank you!!

Wordless Wednesday

2010-12-08T10:10:00.001-08:00

I don’t know how anybody could sleep through the noise of Ben’s treatments but my dad managed to!

Reason # 3,489

2010-12-07T13:12:00.001-08:00

Reason # 3,489 why my husband is amazing. No, this isn’t going to be a sappy love post, I just have to give him some props. By no means do we have the perfect marriage or life but we always strive to put each other first in our marriage. Even if it means doing things we may not want to do.

My husband does things for me all the time. The latest? Christmas lights on our first home.

(do you notice my sidekick that insisted on being in the picture?)

Don’t they look awesome?! Ryan knows how excited I was to get them up so he tackled the project last weekend. He spent 4 hours in the cold and on the roof, putting them up because he knew I’d love them. And I do. He even put them around our front door.

Every woman deserves a husband like mine. Don’t mind the over grown plants. That’s his next project on the Honey-do list :)

MBA

2010-12-06T15:20:00.001-08:00

When we were in Carmel for Thanksgiving, Ben and I decided to hit up the Monterey Bay Aquarium. We are so lucky to have such an amazing place close by and even luckier that my parents have a membership.

We were meeting an old high school friend of mine and her daughter for a day filled with fish. The weather was gorgeous in Monterey. Clear with a crisp breeze.

Little Man loved hanging on to the railing, pointing out everything.

I wasn’t able to get many pictures once we got inside, the kids kept Lindsay and I on our toes!! They had a blast in the kids area, going up and down the slide, splashing in water, running in the tunnel and coloring.

The only picture I was able to take inside. Both have untamable amounts of energy!

CF video

2010-12-05T16:47:00.001-08:00

I know most people have seen this but I wanted to pass it on. It’s an adorable video about CF that can be easily explained to kids. I plan on saving it for Ben’s friends!

Hooray!!

2010-12-03T13:36:00.001-08:00

I have my computer back!! While it’s not fixed, I’m just thankful it’s working. We are going to hold out for a bit in getting me a new one, our house purchase pretty much drained our savings so I have to be patient. Anyway, I can finally post some of my photos!!

Rewind…….

When we were in the hospital, people were very generous with gifts. We received a lot of art supplies including multiple amounts of stickers. While in the hospital Ben wasn’t too interested but has really taken an interest in them lately.

He asks to color daily.

I’ve had to remind him, “only on the paper” a couple times.

As you can tell, he is also loving the stickers. He brings them to me and points to the ones he wants. His favorite are the stickers of animals. The first time, he held one up and tired to snuggle with it!! That’s when he first discovered that stickers can also stick to his face…

Pretty priceless picture, isn’t it?

He switches the crayon from left to right but seems to favor his right. Looks like he could end up being righty.

Some stickers end up on the paper, some end up on the face.

Aaaahhhhh, it feels good to be back. Could blogging be classified as an addiction?

You got it!

2010-12-01T09:16:00.000-08:00

Okay, 99% of you agreed that yes, Ben does look like this little guy. Who is he? He would be my now 17-year-old brother, Weston. Personally I think they look a lot alike and it comes down to the eyes and hair. It's fun to hear people say, "wow, he looks like Weston". I never thought my own child would look like my brother, ha!
I was supposed to get my laptop back today but there was miscommunication between Ryan and I over it. I am getting my computer back but it won't be fixed. It costs more then it's worth to be fixed so I'm not sure what we are going to do. I'm going to try and get the last couple months worth of pictures off of it. Luckily, I backed up all of Ben's pictures from his birth except for the last month. Total bummer. I use the computer multiple times a day to pay bills, blog and stay sane as a SAHM. We'll have to figure out what the plan is...
Next week is Ben's 12-week clinic appointment. He'll be recultured and checked out. There is really nothing too new, I'm going to have them teach me to listen to Ben's lungs and will pray for a clear culture. I am taking Ben to the Pleasanton clinic for this appointment. This will be our first time seeing our whole team with an official appointment not just getting recultured. This clinic truly is closer and more convenient for us to go there however, we'll have to switch pulmonologists. We love our current one and am not sure if we are ready to switch. I always figured we'd switch at some point and this will be our trial run for me to make the decision. Lots to think about.
By the way, Happy December!! Am I the only one who is completely taken back that it's already December?!

Do you know who?

2010-11-29T14:19:00.000-08:00

I should get my computer back Wednesday, wahooo!! I have SO many pictures to upload. We are back at home and are so glad to be back in our own space. We had a blast this last week and I came across a picture I just have to share. Many people say Ben looks like this guy...

Do you know who he is? Do you think he looks like Ben?

Thanksgiving post

2010-11-27T13:30:00.000-08:00

Phew!! We have been so busy but have been having so much fun down here in Carmel with family. Last night, Ryan and I went to our ten year high school reunion. It was so good to see old friends and to get dressed up for the night. We went downtown after to a bar and stayed out way past our bedtime! We realized we can't hang like we did in high school, ha!
We are so enjoying time with family and friends. I can't even begin to count the amount of people that have told us how cute Ben is and how they are praying for him. Thank you!! All prayers are much appreciated for our little man. It's amazing to see how such a little guy has touched so many people. It's also good to know that we are biased in thinking he's adorable and amazing! :)

Without further ado, my Thanksgiving top ten list of things I am thankful for:

10. The internet. May sound dumb but when you are a stay at home mom to a child with a chronic illness you can sometimes feel isolated. I am thankful for my contact with all my CF moms which would not be possible without technology.

9. My freedom. I am thankful I live in a country where I am free. I am also thankful to all who gave their life so I could be free. Thank you.

8. Our play group. It's been so wonderful to meet other moms in our area. They have been a great support system and have made it easy for me to feel comfortable bringing Ben around their kids. Ladies, thank you for all you have done. I love your kids like my own.

7. Homeownership. I am thankful to own my first home. In a time in which many people are losing theirs, I am thankful for mine.

6. Family. My parents are amazing. They do more for Ben then I can begin to list. I am also SO thankful for mine and Ryan's extended family. Aunts and Uncles who really make an effort to spend time with Ben and who love him like he's their own. Aunt Regina, you're at the top of the list.

5. Ryan's job. Ryan's job is steady yet flexible and I am thankful for all that it has provided us especially our new home. It allows Ryan to work from home and even attend some CF clinic appointments which is extremely helpful to me.

4. Great insurance. We are so blessed to have insurance that covers our whole family. CF is an expensive disease and we are lucky to pay the bare minimum.

3. Our CF team. Our team goes above and beyond for myself and Ben. They provide top care for him and are always willing to go the extra mile. They answer pages on weekends and always squeeze us in if needed. We are so thankful to have an amazing team that loves Ben and keeps him healthy.

2. Benjamin! My amazing, strong, handsome, studly son who amazes me every day. He has taught me to take nothing for granted and to be thankful for everyday. I love him more then I thought possible.

1. My husband. We've been through a lot the last 3 1/2 years and I love him more everyday. He works hard for his family and would give Ben and I the world if he could. Together we created an amazing son and I look forward to more.