A Little Bit Of This And That

I am happy to report that this year has been grand! I am the healthiest I have ever been since I graced this world. I have spent 310 hours hooked up to my percussion vest since about this time last year. That's almost 6 hours a week for one entire year. All this restraint to get the mucus shaken around in my lungs in order to keep the yucky bacterias from settling in there. And don't forget the multitude of breathing treatments, enzymes and vitamins to boot. All of these preventative measures seem to be doing the job and keeping me in tip top shape. I have my last pulmonologist and short gut doctor visits for this year on December 15th. I will report back on how those two appointments turn out. Please cross your fingers that the pseudomonas aeruginosa has stayed away and I don't need to return to my TOBI breathing treatments. I have thoroughly enjoyed the break from those. It has given me more time to be the crazy, silly, 2 year old I love to be.

This fall/winter I have been enjoying the holiday festivities and parties. Here is a photo summary of the last month and half.

Here I am as a tiger on Halloween.

Painting my turkey plate at ceramics class.

Already trying to kiss the girls (my friend Brooke):

Mom took me to Chicago to visit one of her BFF, my aunt Lo. I loved riding the "L".

The Chicago Diner. A vegan friendly diner which was great for my dairy allergy. I had this awesome vegan carrot cake! Yum!

Aunt Lo and I walking out of the aquarium

The Counter restaurant eating some delicious, high calorie, deep fried onion strings and sweet potato fries.

I really loved Chicago!

Cutting down my Christmas Tree with Mom and Dad!

Next post I will share my pictures I had taken with Santa Claus and my doctor appointment details. Until next time...

Peace and Love,

Ben

Fall Fun

It has been a while since my last post. I have been living life to the fullest that I have put the blog aside for a little while. Parties, bike rides, painting, and the zoo are just a few of the activities that I have been enjoying. I got an early Christmas present from Grandma Carol and Papa Phil. A Strider Glide Bike. It is blue and I love it. It is supposed to help me transition to a 2 wheel bike much easier than using training wheels. I use my feet to push myself.

I went to the zoo last Thursday and watched the animals play with pumpkins. It was neat. I met my friend Nick and his little brother Mike at the zoo. We spent almost 4 hours there!

Here are a few pictures from the lovely fall day at the zoo:

Friday I went to Nick's for a Pumpkin Painting Halloween Party. All the kids painted their pumpkins, but I just wanted to play with Nick's wooden train set. I didn't want to leave when it was time to go so that is when I asked to paint a pumpkin. Mom and Dad said we had to leave because it was way past my bedtime.

Saturday I had my Cousin Emma's Birthday Party. I had a blast there as well. All the kids dressed up, but I did not want to wear my costume. Maybe I will want to wear it on Halloween, but we will see.

I finalized my weekend with Sam's 1st Birthday Party. He had a train that drove us through the neighborhood. I wasn't too sure about it at first, but I finally went on with Mom and I even wore my conductor's hat!

Mom and Me on the train at Sam's Party:

My favorite college football team the MSU Spartans is 8-0. Anytime I see anything Green and White I shout go Sparty and Go Green, Go White, Yea! Hopefully Mom and dad will take me to whatever bowl game the Spartans may be attending!

It has been nice not having to do TOBI breathing treatments. It saves me about 25 minutes in the morning and at night. I had three clean throat cultures which has allowed me to take a break from the inhaled antibiotic. Hence my late nights partying it up!

I have to go next week and have blood work done. They need to check all of my vitamin levels. I had elevated levels of zinc so we want to make sure that is not going up. I need all my fat soluble vitamins A, D, E, K and we have not been able to find any vitamin supplements with all of those and no zinc. I have been taking only one Source CF soft-gel instead of two. Hopefully my other levels have not gone below the normal range. I do take extra vitamin D drops because my vitamin D used to be way below normal. I have been able to keep it up with plenty of sun and about 18,000 IU's of vitamin D a day. Sounds like a ton, but I probably dump more than half of it in my stool.

I am the healthiest I have been since birth! Life is good and I am thoroughly enjoying every minute of it!

Happy Halloween!

Ben

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

Big Foot!

Happy St. Patrick's Day!

Since my last post I had my 2nd Birthday on March 10th! I had a great time on my birthday. Mom and Dad took me to Steak and Shake for my birthday dinner. I got two steak shooters with frisco sauce and some fries. I downed those two little burgers and loved every bite. Dad and I ate at my picnic table I got from Grandma Carol and Papa Phil. I celebrated my birthday on March 13th with the family. I got a lot of gifts and had a great time with my cousins Josh, Maddie and Sara. I got a police car for one of my gifts and I sure do love it. Mom made me Elmo cupcakes and they were very good.

Today the luck of the Irish was on my side. I had my 3 month check up with Dr. Nasr and it went very well. I weighed in at 25lbs 7oz! I was 34 1/2 inches long! I was up 2 pounds since my last check up with Dr. Nasr in December, but if you remember I had lost a pound in December because I was sick. So basically, I gained 3 pounds in 3 months. My height is around the 50th percentile and my weight is climbing closer to the 25th percentile. Those spoonfuls of coconut oil and large bowls of coconut ice cream, I eat daily, must be working! Mom says this is a great day to have a Guinness or two in celebration of our hard work!

We made a few changes to my medications. I am now going to take a Creon 6 along with my Creon 24 before each meal and snack. I also get to use an albuterol inhaler (I have to use a spacer so I get the medication) instead of nebulizing it. This with save on some breathing treatment time. Dr. Nasr also increased my Hypertonic Saline to twice daily.

I got a new wagon and I love it. I think it is a car and when Mom takes me on walks I say "Wee". When I got back from Ann Arbor today we went for a walk around the block. Now I need a nap so I can get some much needed rest. I was not happy when Mom woke me up at 7:30 this morning. I like to sleep until 8am!

He Shoots, He Scores

Great Results!

Last week I had a bunch of blood work done and some urine labs as well. We went to Beaumont to get the labs done. Mom called the three doctors to get my lab requisitions sent to the house in order to save us a trip to Ann Arbor. The allergist, nephrologist and GI doctors all sent the paper work to the house. Since I seem to have a bunch of medical supplies in my neatly organized large cabinet Mom was able to put a U-bag on me before we went up to the hospital for the labwork. They were able to get all of the blood they needed. Of course I screamed bloody murder and broke quite a few blood vessels in my face like always. Unfortunately I did not have enough urine for all the tests so we waited around the hospital for a bit while I drank my favorite drink of choice, water. After about 45 minutes Mom said it was time to go and we would come back later to drop off the rest of the urine for the tests.

A few days later the nephrologist called to tell us that I had 'beautiful' lab results and they were very happy with all of my numbers. everything was within normal range. My creatinine was .3 and my BUN was 14. My vitamin D level was 47 for quite a while and Mom switched me from the vitamin D2 to D3 in hopes I would absorb it better. Well this time my vitamin D level was 67! All of my iron saturation studies and levels were great as well. Mom and Dad were so ecstatic to hear this wonderful news!

Almost two years and my body has done some amazing healing. It took a lot of patience and hard work, but look at me now.

In one month I will be two years old! I am so excited for this year and can't wait to experience my life even more. I am getting so big and already testing my parents.

When Mom asks me if I want to start my treatments I say "No" or I go up to my booster seat and say "Eat". I know they like me to eat, so that seems to prolong me from having to get strapped in my percussion vest and start my breathing treatments.

I am into "cahs" lately and I love to line them up and race them across the floor. I some how get Mom and Dad to buy me another Hot Wheels or Matchbox car each time we make a trip to Target. I am also into trains as well. I like to call them "choos".

I still go to be really well and love to get in my crib. It is still my safe cozy place. Mom tries to get me to snuggle with her in her bed, but I want nothing to do with it.

As far as food goes I am still a wonderful eater. My favorite food these days are raisins. I like to call those "me's". Mom is surprised I haven't turned into a big raisin I eat so many. I also like the vanilla Oreo's, but I only eat the center and leave the rest on my plate.

~Ben

Mr. Cool

It's a New Year

I felt like a nomad around the holidays. From one house to another, I wasn't quite sure about the abundance of traveling, but I seemed to have a good time.

I actually had a visit to the pediatricians office on Christmas Eve morning because I had a bit of a temperature. My throat was red and irritated. They just said I was fighting a cold and to take Tylenol and drink plenty of fluids. This "cold" progressed into a nasty wet cough after a few days. I seemed to be my silly self, but I did look a bit run down. Since I had cultured positive for pseudomonas aeruginosa again Dec 9th Mom and Dad thought maybe my body was trying to fight that nasty bug that has decided to dwell in my lungs. One big concern with the pediatrician appointment was my weight loss. I lost almost a pound in about a month. One pound for me is a big deal. I was still eating well so it seemed something was causing me to burn the massive amount of calories I eat in a day. I probably eat as many calories as Mom does (or Mom should) which is about 1,200. It is usually a sign that when people with CF lose weight quickly they quite possibly have something going on like an infection.

Mom called Dr. Nasr's office and they decided to put me on Cipro suspension for 21 days. After a few days Mom and Dad could tell it was working. I didn't look as run down and the cough has gotten better. I still have a cough, but it is less frequent. I start the nebulized Tobi on Jan 6th, so hopefully that will team up with the Cipro and keep anything from rearing its ugly head.

That's my yucky medical update now on to the good stuff...

I loved all of my gifts on Christmas. I got a bunch of Elmo stuff. I got a Sesame Street Live Elmo, Hokey Pokey Elmo and a small soft furry Elmo I love to sleep with. I had a blast with all of the family and got to stay up way past my bedtime.

I was crazy with my cousins and ran around non-stop.

I even got to see my "grandparents" from Brazil.

Uncle Adam sent me a gift all the way from Hawaii.

If you ask me what Santa says I can say "Ho Ho Ho".

Anytime something falls or someone drops something I say "Oh No" or "Ow".

I am going to rule this 2010 and show 'em all who's boss!

Cheers to packing on the ounces in 2010!

Love,

Benny :)