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Wednesday, March 31, 2010

Benjamin Bunny

Yesterday, my mom and I took Ben to the mall to get his picture taken with the Easter bunny. I wasn’t too sure how he’d react. Okay, I’m lying- I thought he was going to freak. I tried to chose a good time; right after his nap with a full tummy.

Well, we got there and there was no Easter bunny in his house! I turned to my mom and said that I was going to be so annoyed if I got Ben all dressed up, drove to the mall and there was no darn bunny.

However, the lady at the cash register reassured me that he was going to be right back. Sure enough, I saw a bunny walking through the mall with a trail of kids. We were the first in line and Ben just stood there watching. When they removed the rope cord he literally ran to the Easter bunny. It was hilarious!

I picked Ben up and sat him on his lap. He looked up at the bunny, then over at me and smiled.

 

ben easter As I went to pay and pick up our prints, Ben escaped and tried to run back to see the bunny. He almost ran into someone else’s photo! I should have known my little man would be okay.

Monday, March 29, 2010

New

Today is Ryan’s first day at his new job. He left our house this morning at 3:45 am to catch a flight down to Orange County. He’ll be there over night to start his training.

Ben and I are hanging out with my mom in the mean time. I’m putting together his Easter basket, they are adorable things at Target to fill it with.

After my heavy posting from Saturday, I thought I’d lighten it up a bit. I wanted to post new videos of Ben doing some of his new “tricks”.

However, I can’t deny that my last posting is reality. People are dying from this nasty disease. Everyday. Young people.  We need your help. Please continue to donate to the CF foundation towards a cure. Thank you!

Saturday, March 27, 2010

A heavy heart

Breathe easy now Eva

http://65redroses.livejournal.com/

People are dying everyday from CF. Please continue to donate to the CFF towards a cure.

By the year 2013, the CF Foundation will have 12 drugs in Phase 3 trials or to the FDA approval desk and 4 of those drugs are aimed at CURING THE BASIC DEFECT OF CF. This is all because of you and your donations! Thank you!

Friday, March 26, 2010

Allll clean

Lately, the little man has taken to barfing. That’s right, barfing. The last couple weeks he has thrown up 4 times. And by thrown up, I mean, it comes up from his toes. Poor guy, he just seems to be sensitive. He goes into a coughing fit and up comes his latest meal.

Last night it was a coughing fit that took out our couch cushions. One person didn’t seem to mind though…

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My poor little man, he just can’t seem to catch a break. Our CF clinic says to just watch him and if it keeps happening, we’ll talk about some options. However, I don’t think it’s CF related. We just need to keep towels handy.

I decided to get him a new toy container. We had two big bins that his toys went into and yesterday, while I was digging for one of his trucks, I came across a cracker that was who-knows-how-old. So I decided to get him a container that keeps his toys more in the open and organized.

IMG_2485 Since I was making the transfer, I decided to clean and disinfect his toys. That’s right, I cleaned every single toy. Most I soaked in a sink mixed with water and bleach. I have done this in the past but need to do it more often. It gives me peace of mind, knowing that all of his toys are disinfected. I will continue to do this every couple months.

We are enjoying our last couple days with daddy before he starts his new job. He gets to take Ben to Gymboree today, something he has never been able to do. We will miss our time with him but are excited for his new endeavor!

Thursday, March 25, 2010

Vitamin E

We’ve been getting plenty of it lately. Ryan and I went to Target and decided to get Ben a little pool  for our balcony. We found a great one for only 5$! So we blew it up, filled it with some warm water, and watched him play.

IMG_2464 IMG_2465He lounged….

IMG_2471Refused to wear his hat…

IMG_2472Had fun jumping in and out….

IMG_2473    and decided to lose his diaper…

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We gave our neighbors a lovely view…

IMG_2474I love the warm weather!!

Tuesday, March 23, 2010

ALL better

Thank you to everyone for my comments on Facebook about Ben. He’s doing much better. He woke up this morning completely back to normal, thank you Lord.  We’ll try peanut butter again in a couple months. I’m slightly disappointed because pb has good fat and protein for little CFer’s but I’m just glad he’s okay.

Any hoo, I didn’t get a chance to post up some pics from our times in Carmel Valley this weekend.

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On Saturday we had a BBQ with some friends at my parents home.

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Ben and his future girlfriend, Abby.

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IMG_2433 Ben kept trying to give Abby “kisses”.

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Ben and his Papa

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Ben and his godmom

IMG_2434 Wrestling with his Uncle Weston

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Monday, March 22, 2010

We discovered…

that Ben is allergic to peanut butter. The poor guy, broke out in a really bad rash. It wasn’t even that much peanut butter, just a little in his smoothie.

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My poor baby, he’s just a sensitive guy.

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When he was in the NICU, he had a severe allergic reaction to the tape on his face. It took off a couple layers of skin.

IMG_0634Even to this day, I try to not put any band aids on him for fear of a rash. 

We are just waiting for the Benadryl to kick in. I guess the peanut butter crackers will have to wait.

Friday, March 19, 2010

Carmel

Ryan, B and I are in Carmel for the next couple days at my parents house. Ryan gave his two-week notice to SB but they asked him to make Monday his last day. So, we are taking advantage of our two weeks with daddy! It's nice to get some time in with Ryan, he's going to have a pretty hectic schedule once he starts on the 29th. A lot of traveling at first, down to LA and San Diego. I'm even trying to work in a weekend for Ben and I to fly down. Perhaps a trip to Disneyland?! We shall see. Ryan's hesitant about me flying with Ben for the first time alone but I feel pretty comfortable with it.

While down here we are seeing old friends, friends that could not make it up to Ben's party and perhaps a trip to the Aquarium.
The weather has been beautiful! Two days ago, I actually had to buy Ben some spring/summer clothing. Little man has pretty much been set with clothes since birth so it was a shock when I went to put on some of his old shorts and they didn't fit.

Now that Ben's birthday party is over, I'm focusing on our Great Strides walk, May 1st. We need as many people as possible to donate or walk or both! You can join my team or donate by clicking my GS widget at the top left hand side of my blog. You can also find it on my Facebook page. Zero is the amount of government mandated money towards CF research. Great Strides is the main fundraising effort that the CFF puts on so it's very important that we get as many donations as possible. I truly believe there will be control for this disease in the next 15 years and we need your help to get it here! 90 cents of every dollar donated goes directly towards reserach. I know times are tough but even a small donation will help. Please continue to give whatever you can. I'm just a mom, fighting for my son's right to live a long and healthy life. Please join my fight!!

Wednesday, March 17, 2010

The Happy Dance

Ryan and I are doing the happy dance! Why, you ask? Two reasons…

1. Ben’s culture results came back and he is no longer growing pseudomonas!!!!!! Yay!!!

This means we (a) don’t have to do anymore TOBI and (b) can put the Pulmozyme talk to rest for awhile!! We are so relieved, pseudo can be a stubborn little sh*t and tends to make it’s home permanently in CFer’s lungs. We are so thankful that it only took one round of TOBI for us to get rid of it. Ben will have to be cultured two more times to make sure but the fact that it isn’t showing up on our first culture is a good sign.

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That means this guy can spend more time watching the gardener and less time doing treatments!!

 

2. My aunt’s brain surgery was a success and she is doing well in recovery, another thing to be thankful for.

Won’t you join us in celebrating?!

I’m off for a celebratory cocktail because life is good!

wordless wednesday

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Fish

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Face

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Tuesday, March 16, 2010

Beautiful

That’s the only way to describe our weather today. We had to get out and enjoy it. I got the idea from my friend Jen,  to take our wagon to the park. Boy, did Ben have fun. Tomorrow I think we might hit up our pool :)

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Riding the horse. He got frustrated when it wouldn’t move.

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Ben has been enjoying some of his new toys from his birthday.

IMG_2393Notice how the bears on his tummy look stretched out? Yeah, that’s what happens when you’re in the 80th percentile! Good thing we got plenty of outfits that have lots of “tummy stretch” for him, ha!

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Enjoying some of our left over party food.

IMG_2392Pool pics to come.

Monday, March 15, 2010

Some BIG news

Hold on, if you read this post, you know what it ISN’T but it’s a step in that direction.

After 3 years of working with Slakey Brothers, Ryan has decided to take a new position in medical device sales. While we are very appreciative for all that Slakey Brothers has done for us,  we feel this is the best move for our family.

I can quit work, and we can start to look at buying a house. All things we have been wanting and hoping to do. I hope this move will bring Ryan happiness work-wise, something he deserves. His schedule will be pretty full these first couple months, and I know it will take some getting used to, but we are very excited for the future.

In other news, I have to update on our mini-clinic visit last Thursday. UCSF has another clinic in Pleasanton, so we were able to drive there to have Ben recultured. The drive was very nice, it only took an hour and a half versus our two and a half hour drive to UCSF. We met up with our nurse practitioner, she is at the Pleasanton clinic on Thursdays. She took his throat swab and talked about where we are going to go from here. If pseudomonas comes back up on his culture, we’ll start TOBI again in the beginning of April for another 28-day cycle. She also talked about starting him on Pulmozyme if he continues to culture pseudo. When you have an infection, like Ben has in his lungs when he cultures pseudomonas, white blood cells go to the area to help clear up the infection. In Ben’s case, his white blood cells get caught in his mucus and eventually die. Pulmozyme would help break down the white blood cells, causing Ben to cough them up.  It would be a 30-minute, inhaled treatment done once a day.

I am a bit hesitant to jump into Pulmozyme. There is very limited amount of research on children younger then 5 years using it and the long term effects it has. However, I have complete trust in our clinic but will want to wait until it’s really necessary for us to start it. We’ll just have to wait and see what his culture results reveal. They should be in mid-week.

We also talked about moving to the Pleasanton clinic. Our team would be the same except for our Pulmonologist. This is a huge decision because I LOVE our pulmonologist we have now. He has a great bedside manner, always a positive attitude, and thinks Ben is just adorable (who doesn’t though?!). So this is something to consider, a shorter drive would really help cut down my stress level on clinic visit days. I think I may go to the Pleasanton clinic for our next annual to meet the new Dr. and get a feel for her. I feel confident that I can make the best decision when I’m ready.

Ben’s fever seems to be going down. It got pretty high last night but it seems to have subsided today. Let’s hope it’s gone for good! Could have been teething but I’m done trying to guess when his teeth will come in. For now, we’ll just keep administering the Tylenol and replaying Thomas the Train.

Lastly, I want to say thank you again to everyone for coming to Ben’s party. Many traveled from far and it was greatly appreciated! Thank you to my in-laws for managing the BBQ and helping with clean-up. Ben is enjoying his new toys and thank you to all who donated to his college fund and the CFF, the best gift possible!

Sunday, March 14, 2010

Thank you!

I don’t have time to post much, the little man is rockin’ a pretty high fever, but I wanted to say thank you to everyone who came out for Ben’s party.

We had such a nice time, 45 guests and 30+ lbs of tri tip- I’d say it was a success! Hopefully Manny just needs a day of rest to get over this sickness. He’s managed to muster up some energy to play with his new toys :)

IMG_2363The Birthday boy in his birthday outfit.

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He didn’t smash any cake. He actually started to cry from all the attention. Poor guy, he was obviously coming down with something.

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Thank you again to everyone, especially my parents who were in charge of the food and were the party sponsors!

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