My first attempt

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.

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

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!!

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

                                                                  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

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

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

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!

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

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

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

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

Reason # 3,489

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

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

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!!

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!

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?!