My 1st trip to the Ocean!

I spent a week with my parents, grandparents, aunt and uncle and cousins in Nags Head, NC. We had a house rental on the beach which was amazing! I loved every minute of the vacation. I had a great time playing with my cousins, Josh and Maddie, and I loved playing on the beach and in

the ocean. We picked and ocean vacation because the salt water air is good for CF lungs. One of my medications is 4% solution of Hypertonic Saline. It is a sterile saltwater solution that I inhale twice daily via nebulizer.

Our Beach House...20 feet from the ocean!

I visited Kitty Hawk and saw the place where the Wright Brothers first started there attempts and flying. I got to fly a kite and it was a beautiful, windy day to do so. I was kind of crabby at that visit. I had to excuse myself from the history portion of the tour.

I ate some great fresh local seafood. I love a variety of foods just like Mom and Dad. This is me enjoying some delicious fried Mahi Mahi with a spicy aioli sauce. I really liked. Don't forget the hand cut fries on my plate as well. I am supposed to get 1,900 calories in a day hence the fried options and dips.

I slept on a blow up mattress in my parents room and I loved that bed. i jumped from my parents bed onto the blow up mattress constantly. The last day when Mom and Dad packed up my bed I went into the room and threw up my hands and said, "Oh no my bed"! LOL I did not want to go home. I also said, "No home" the day we were packing up. I wanted to stay at the beach house and live.

This has been the best summer thus far! I was so busy and had so much fun! Cheers to summer 2010!

Sunny Skies,

Ben

Hair Cut and Big Boy Bed

It has been a while since I last posted about my life as a little dude, but I have been enjoying it so much I haven't had time. Dad and Mom cut my hair and all of my curls are gone. I look so grown up.

I went to Wolf Lake to spend the weekend with my cousin Emma and I decided to climb out of the pack-n-play so when we got home we tried the big boy bed in the guest room and I did well. The next day Mom took me to Target to get me a big boy bedding set. I scored some cool car and truck bedding. Mom and Dad took down my crib and put in the full size bed. I am so grown up!

I have been loving our community pool and I did a week of swim lessons. I even got to go off the diving board. I love to jump and go under the water.

Last night I helped Mom make Sloppy Joe's. I decided they needed salt all on my own. I slide the stool over to the salt grabbed it and pushed the stool back over to the pan to add the salt to the pan. I am a little man who likes to take initiative.

Summer Lovin

I am having a blast this summer! I first had to fight off a fever that turned into an ear infection in the beginning of June. I just finished my antibiotics and I am doing well. I have been swimming at the community pool a lot. I have went to quite a few parties already this summer. I also went to the Bay-rama Fish Fly Festival. I love to announce to the world when I am heading to a party. I love hanging out with my friends and family. I always have a great time. So far this has been the best summer yet!

Playing in my bubble filled pool in the backyard

Lounging out in the hammock at home

Dumping water on my head at the pool

Playing T-ball

At the Bay-Rama Fish Fly Festival:

On the train ride...I cried the first time around

Petting the goats. I love the farm animals!

Petting what I like to call "Bun"

On the swing ride

Papa Phil and Me on the Carousel

Cotton Candy

Family and Friends=Love and Support

I had my throat culture results today and I have cultured nothing for the second time! If I have no PA in the next culture (in September) I will be able to go off of inhaled TOBI until I were to culture it again. That is lovely news my parents and I were happy to hear!

Another lovely bit of news I wanted to share was the four Great Strides walks that my family and friends participated in throughout the country!

My Great Uncle Norm, Jerry, Jennifer, Delaney, and Logan all walked to fight CF in Atlanta!

My Great Uncle Gord, Great Aunt Claire and Cousin Reagan walked in the Great Strides in Charleston, South Carolina! This walk took place on the beach!

Buffy, Scott, Peyton, Ben, and their neighbors walked in Tampa, Florida for a cure! Their Great Strides walk was at the Zoo!

My Uncle Adam walked in Hawaii with a group of friends to fight for a cure!

My heart smiles each and every time I look at these pictures! I can feel the love and support from afar and it puts a huge grin on my face! What lovely people I have been graced to have in my life! It is with all of this support that we are closer to a cure! I love you all and thank you so much for everything you have done to show your love and support to my parents and me! I am one lucky little dude!

Peace and Love,

Ben

Great Strides 2010

It was a windy, cold day last Saturday for our Great Strides walk. My Aunt Annie and Cousin Emma watched me while Mom went to the walk. I had a blast playing with them. Dad had to be in Mount Pleasant for work leadership training.

My parents and I want to thank all of you who came to the walk, who were there in spirit, and those of you who donated to help me and all others fighting CF. Your generosity pushes us closer towards a cure. I also want to thank all of the family and friends walking in other states this year. Ben's Buddies is now recognized as a national team! The support system we have is amazing!

We had new shirts made this year. I want to thank Somer Love for donating her artistic talents and for giving Mom permission to use one of her painting designs on our shirts. Somer is a fabulous woman who Mom got a chance to meet over the phone. Somer called her all the way from Utah! Mom loves Somer's work and also loves the jewelry her friend Lissa makes (using Somer's art as inspiration) to raise money for CF.

We still have shirts available. Each shirt is $10 and $5 will go towards CF. If you would like a shirt please e-mail Mom at katipannecouck@gmail.com and let her know the quantity and size. If we still have your size available we will put one aside for you. The sizes range from youth medium to adult XL. If you would like it shipped it will be an extra $4 to package and ship the shirt.

If you would still like to donate to help me in my fight you can click on my Great Strides link on the right hand side of my blog.

High Five,

Ben

PFT Results

My PFT results did not really change from my last one I had almost a year ago. They still noted some mild restriction and bronchodilator responsiveness. For the infant PFT they figure a FEV .5 not a FEV 1 and that was 82%. My total lung capacity was 73%. This was up 2% from my last test.

The chloral hydrate really had some side effects this time around. I vomited when I was forced to wake up before going home. The nurse had to do all her vital checks and make sure I could drink something. I was not fond of this wake up process and cried. Mom said I was equivalent to hanging out with a drunk, determined 2 year old when we got home. I could not stand well and kept falling down. I was determined to play with my cars. I did not want to sit on the couch. After falling a few times Mom moved me up to my room so I could be cushioned by the carpet. Eventually she tried to put me to bed and I just cried. Me crying is not a normal occurrence because I love to go to bed. Mom climbed into my crib in hopes this would get me to sleep. I thought it was so fun I jumped on her like a horse and kept laughing and falling back to hit my head on my crib rails. Finally, she left my tired, silly self to go to sleep. I had been up since 4am. I slept for the PFT that was about 1 hour and I slept for maybe 20-30 minutes on the way home. I was so exhausted and loopy by the time I finally took a nap.

The doctor is not going to change my medication routine. I will just continue my daily list as usual. I am not a big fan of doing the vest lately, but Mom makes me compliant. I get to watch anything I chose. I am a big fan of watching Thomas the Train these days. I am pretty sure I have seen all the episodes On Demand about 25 times.

I love going for bike rides with Mom. I ride in the bike trailer on the back and just play with my cars and eat snacks.

Yesterday I had my last seasonal dose of Synagis to protect me against RSV. Two pokes, one in each thigh. I have two more doctors appointments coming up. The short gut doctor in May and Dr. Nasr in the beginning of June. Once those appointments are over I am looking forward to an appointment free summer of fun!

The CF great Strides walk is less than a month away! Please sign up to walk and donate what you can to help me in my fight against CF. We are losing precious lives to CF daily and there is no better time than now to find a cure. You can donate by clicking on the Great Strides link on the right hand side of my blog.

Please send positive thoughts and prayers to 7 year old Conner and his family. Conner is a CF Warrior who is at war with his CF. You can read about Conner on his blog: http://www.notsobrightandshiny.blogspot.com

Together we can fight CF!

Ben

Swallowing my enzymes like an adult!

Well I am now swallowing my 5 Creon 6 enzymes like a super big boy. No more sprinkling of the beads on the applesauce. This will help Mom and Dad while we are on the go...a few less things to pack. No more spoons and jars of applesauce. I am still amazing those parents of mine every day.

April 13th I will have my second Pulmonary Function Test (PFT). It will be just like the first one I had. Wish me luck!

I am obsessed with trains lately. We live a block from the train tracks so I hear them go by all day. Daily, I ask Mom and Dad, with my hands up in question, "choo"?

Choo Choo,

Ben