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!