Benjamin Anthony

New Year, New Heavier Ben

2012-02-06T23:19:00.006-05:00

Ben had a PEG Tube placed on Jan 13th. He had not gained any weight in over six months. We always knew it was a possibility he might need one to help him gain weight. His body just needs more calories than he is eating. Having Cystic Fibrosis and short gut does not help in the weight department. His BMI fell off the chart so we needed to make the decision to go ahead with the surgery and have the feeding tube placed. Ben had a follow up appointment today and he weighed 33 pounds! The day of surgery he weighed 30.5 pounds. He is packing on the pounds and that makes for a happy Mom and Dad. He did well after surgery and was back to his spitfire self very quickly! We only had to spent one night in the hospital. The new C.S. Mott is very nice and it was great to have our own room.

In December, we flew to Hawaii, to see my brother graduate from U of H. Ben had a great time and he did well on the long flight there and back! Here are a few pictures from our trip.

Crazy Wonderful Summer

2011-09-04T20:03:00.003-04:00

We have thoroughly enjoyed our summer! As you can tell from our looong break from blogging we have just been living life to the fullest and I took a break from the blog. We travelled to Denver and Vail Colorado in June. Chris had a work awards ceremony for being in top sales for his company so we decided to make a family trip out of. It was Ben's first flight so that was interesting when it came to packing and carrying on all of the medical supplies! We checked all of our clothing etc. But we had to carry on all of Ben's necessities. We made it and Ben was a very big boy on the flight and never even cried or complained. We even caught a Tigers and Rockies game while we stayed in Denver. We headed to Vail for the last part of the trip so Chris and I could attend his work function. I was able to attend because we hired a babysitter through the Four Seasons and it worked out so well. Go figure we had a woman who used to be a pediatric nurse and was also a retired teacher. That put me at ease! She said she had a patient with CF when she was starting out as a nurse and we chatted about how far the treatments have come! Ben didn't even flinch when we left for the night. He was digging in her Mickey Mouse bag and just said goodbye. What a stinker!

Ben and Chris at the Tigers Vs. Rockies:

Chris and I at his awards ceremony:

We spent several days at the Pleasant Ridge Community Pool. Ben did well in his swimming lessons. He graduated from level 1 and will start level 2. Ben also started speech therapy classes once a week in July. Chris and I felt he was a bit delayed so we requested an evaluation and he was diagnosed with a moderate speech delay. He is thriving and doing awesome with his speech pathologist.

The speech therapist recommended we check out the Orchard Preschool through Beaumont Hospitals outpatient facility. They run it like a normal preschool class but they also have a speech therapist in the class. I was hesitant because of the CF and germs but I voiced my concerns to the teacher and she was very receptive. They don't even have drinking fountains for the kids so that is good because YUCK! I am going to pack Ben his own container of supplies such as crayons, scissors, etc in hopes of keeping things cleaner for him. The teacher said she disinfects the desks etc. daily and hand washing happens frequently with the children. There are only 5 children enrolled right now and Ben makes 6. The max they allow in this class is 10 so that is nice. Preschool starts on September 6th and will run on Tuesday and Thursdays from 1pm until 4pm. Wow when did my baby grow up! I know he will love it! He keeps asking me when school starts and can he go each day he wakes up. I just hope he keeps his new found potty talk to a minimum. He thinks it is hilarious to call people "Poopy Guy" and I have had to enforce time outs because of it, all while holding back my laughs!

Our second trip this summer was to Edisto Beach, SC. We rented a house on the beach with our friends from Dallas, Texas and Cleveland, Ohio and our friend Scott from Troy, MI. We thoroughly enjoyed spending time with our friends and their children. We had a total blast all week and it was so nice to catch up and watch our children play together. It was a long 16 hour drive including plenty of stops, but well worth it! Can't wait for our next adventure!

The Edisto Crew:

Loving Life,

Kati, Chris and Ben

GREAT STRIDES 2011

2011-05-16T19:20:00.002-04:00

My walk is this weekend!!!

Ben's Buddies Detroit Riverfront Great Strides Walk is this Saturday, May 21st. Check in is at 10am and the walk will begin at 11am. The forecast is partly sunny and 75. Hopefully that doesn't change! Sign in should be outside near the carousel on the Riverwalk. Here is a link that has information on the area. http://www.detroitriverfront.org/

Great Strides raised over $35 million in 2010. These funds are vital to support the research of new treatments and drugs that will help me live a long and healthy life. In case you missed it there have been some ground breaking achievements in treating the basic defect of CF. A drug named VX-770 actually corrects the defect for people with a certain mutation. Unfortunately it isn't mine, but we are hopeful that this will pave the way for others to follow. Until now, all of the medications treat the symptoms rather than target the cause. Drugs like this were developed and funded by your donations. Here is more information:

http://www.cff.org/research/ClinicalResearch/FAQs/VX-770/

My family and I appreciate everything that you have done to support us and the Cystic Fibrosis Foundation. We are confident that I will benefit from your generosity. Thank You

Love,

Benjamin

The Big 3 and My Clinic Updates

2011-03-21T16:10:00.014-04:00

My birthday was March 10 and I turned 3! I had a big party at Inflatable Playspaces and I had a blast. I had about 20 of my closest friends and about 30 or so adults attend as well. This was my first big birthday party! Mom made my birthday menu dairy free and that worked out well. We had hot dogs with the fixings for our meal and I had a vegan Thomas the Train cake and an assortment of vegan cupcakes from the Cupcake Station. I have an awesome group of friends and family! They made my party very special!

I had my appointment with Dr. Nasr last Wednesday. I woke up the morning of my appointment with a wet gunky cough. Thankfully we had clinic visit that morning because my throat and nose looked very red and irritated during my checkup. Dr. Nasr heard the cough too, so she decided it was best to just put me on Bactrim before anything serious set in and took over my lungs. I had a fever from Wednesday through Saturday. I still have the yucky cough and I did vomit a few times while I had the fever. Well this morning I received my throat culture results and I am culturing Haemophilus Influenzae. The H. influenzae was the only thing I cultured, so still no PA! Yippiee!!! I have another 3 months without TOBI! This is my third throat culture without PA!

I also received my blood, urine and allergist results this past month as well. I am still very allergic to milk and all milk proteins (casein and whey). So we will just continue to eliminate all dairy products and the foods that use them as fillers. We have become a dairy free home. I think Mom and Dad cheat though when they are out without me. My blood work tested all of my vitamin levels. My iron is finally in a great range and my absorption levels of iron were great too. The best they have ever been. I started taking iron (ferrous sulfate) in a pill form since I can swallow my enzymes Mom made me switch. I take iron twice a day. 45mg of elemental iron twice a day so I get 90mg total. My vitamin A and E were still within normal range but were up so that is good. My Vitamin D was 110! This is actually a bit higher than they want, so we have cut my intake to 20,000 IU's of vitamin D a day. This is the first time my Vitamin D levels have ever been this high. I usually have issues with it being too low because of the short gut and Cystic Fibrosis. They both cause major malabsorption so I tend to dump those fat soluble vitamins in my greasy stools. My urine creatinine results were normal as well.

I also had a kidney ultrasound last Wednesday and an appointment with my nephrologist. Everything they keep an eye from the creatinine, BUN levels and hydration looked great. We were finally able to eliminate one doctor in my life! This was great news! We will still have Dr. Brown my short gut doctor keep an eye on those levels once or twice a year.

Bring on Spring!

Ben

My Allergist Results

2011-02-27T22:01:00.010-05:00

I had my yearly allergist appointment last week. I am still allergic to cow's milk and casein and whey proteins. Basically anything that comes from the cow, but the beef. I will just continue avoiding all dairy. I just replace those dairy options with the plant and nut based options and they seem to do the job. There are plenty of delicious dairy free milks, ice creams, yogurts, cheeses etc. out there for me to eat. I love chocolate almond milk and coconut milk ice cream. Sometimes it can be hard when I am out an about and I just want to grab a high calorie snack, but Mom is never afraid to ask what's in a item or if they can make it without dairy. Lots of people with Cystic Fibrosis eat a lot of dairy because you can get a lot of calories from those food items. I don't know what I am missing so it is all good. There is a chance that I could grow out of the allergy as I get older. My allergist thinks that me living on only IV fluids for the first few months of life and being on an antacid since birth could have altered my natural chemistry and therefore resulted in the dairy intolerance.

I am still growing and staying very healthy throughout this snowy, cold winter. I know all about Purell and hand washing. I take extra Vitamin D and supplements to keep my vitamin levels from being to low. I should get my vitamin levels from my blood work tomorrow. I also take cod liver oil everyday. The DHA in fish oil in known to keep inflammation down in the body. This should benefit my lungs as well as the rest of my body.

Can you believe I will be three years old March 10th! I am so excited to be three! I have been going on the big boy potty since around Christmas time. I still wear diapers to bed at night, but I sport the big boy undies all day!

My Uncle Adam was just in town to visit from Hawaii! It was so great to see him! My Aunt Annie got married last weekend and I was the ring bearer. Mom will post pictures when she gets them. She stood up in the wedding and Dad had to help me down the aisle while I cried the whole time. Mom and Dad were both involved in the festivities, so they couldn't snap the pictures :0

I will update the blog when I get my additional blood work and urinalysis back this week. Birthday pictures to come!

Holidays and Soccer

2011-01-13T20:16:00.012-05:00

I had a wonderful Christmas! I began to understand the concept of Santa Claus this year and asked him for Tom Set (Thomas the Train Set). Every time I see a train I call it a Tom. I also think Sir Topham Hat lives in this silly looking building by the tracks, down the block from my house. I enjoyed opening my gifts Christmas morning. Every time I ripped open a package I exclaimed, "Wow, Cool!"

Here are the pictures of Santa and Me:

Here is one of Mom's favorite Christmas morning pictures. Santa brought me this cool shirt!

My throat culture results from my December 15th, 2010 appointment came back negative for any bad bacteria. PA has stayed away and I hope it continues to! This nice long time away from the inhaled TOBI has been nice! I am kicking CF's butt and it feels good!

I got to start off my New Year's by going to the Michigan State Basketball game. I thoroughly enjoyed it. I got to see Sparty and was a bit scared of him at first, but got over that fear very quick. I clapped and cheered with the best of them. That night after the game I enjoyed some fondue with Mom, Dad and Aunt Lo before I went to bed. I was being a bit crazy so I didn't get to stay up until midnight.

2010 was a fabulous year! I am ready to make 2011 a wonderful one as well. Cheers to another healthy year!

Here is a little video clip of me, on my first day of soccer camp. I am the one in the light blue shirt who gets a goal at the end of the video. I started on January 4th.

A Little Bit Of This And That

2010-12-09T14:39:00.011-05:00

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

2010-10-27T21:18:00.006-04:00

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!

2010-09-11T09:42:00.015-04:00

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

2010-08-04T13:33:00.012-04:00

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

2010-06-29T18:42:00.014-04:00

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

2010-06-07T22:11:00.007-04:00

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

2010-05-13T21:19:00.006-04:00

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

2010-04-20T08:37:00.004-04:00

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!

2010-04-08T09:51:00.003-04:00

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!

2010-03-22T13:41:00.003-04:00

Happy St. Patrick's Day!

2010-03-17T15:29:00.004-04:00

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

2010-03-08T08:36:00.002-05:00

Great Results!

2010-02-09T20:48:00.004-05:00

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

2010-02-01T23:39:00.003-05:00

It's a New Year

2010-01-04T13:51:00.003-05:00

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 :)

Percussion Vest and Santa Claus

2009-12-13T13:08:00.036-05:00

Things have been busy in my world. I just saw Dr. Nasr on December 9th. I weighed 23 lbs 11 oz and was 33 inches long. I had a throat culture done, but I won't get my results until sometime this coming week. I also got my second dose of the H1N1 vaccine. Of course I hated those two procedures, but I didn't scream for long. Mom asked Dr. Nasr about me getting a vest again and she finally agreed to it! After my appointment I went down to the pulmonary lab to get fitted for my percussion vest. I fit in the smallest vest available. I am getting the percussion machine made by SmartVest. It will arrive this coming Tuesday. We have to have a respiratory therapist come out to the house to teach us all about the machine. Mom and Dad have already went on the website to learn about it, but it will be nice to have one on one training. The vest should give me a bit more free time in my day. I can wear it while I do my albuterol, hypertonic saline and pulmozyme. I will have to stop the percussion vest when I nebulize TOBI. Mom and Dad always had to wait until they had finished administering those nebulized treatments so they could have their hands free in order to do my chest percussion. Mom has said if she had eight arms like an octopus she could have done both my percussion and breathing treatments simultaneously. I also finished up my 28 days of TOBI on December 8th. I get about 45-50 minutes of free time, each day, to play and be my silly self. I will start my 28 day cycle again on January 6th. I am partially restraint free for the holidays!

Mom went to San Francisco to visit her friends December 3rd-6th. Mom was finally using her ticket she had from last year when I had went back into the hospital around Labor Day. Mom and Dad were both supposed to go out to San Fran for the MSU vs. Cal game last August. Sadly Dad had already flown out there and had to fly back home the next day because I was sick.

While Mom was gone Grandma Carol and Papa Phil watched me during the day on Thursday and Friday. It was great they were able to watch me because Dad had to work. If they hadn't been available it could have been like the movie Home Alone. Ahhhhh! I had a nice time with them. I said, "Hi Mama" for the first time on the phone when Mom called. Dad took me every morning to get a hash brown from McDonald's. I had a great time with Dad and a nice break away from Mom. We both missed each other a lot. I think she was more excited to see me because she woke me up when she arrived home.

I went to visit Santa Claus. I still was not a big fan of the man this year. I would not sit on his lap, but the silly looking man still appeared in my pictures.

Merry Christmas!

~Ben

Doctors Doctors Everywhere

2009-11-19T15:01:00.008-05:00

I had two doctors appointments this week, back to back. Wednesday I went to see Dr. Brown. I amazed the intestinal team once again. I averaged a 6 gram a day weight gain from my last appointment. They were very pleased with that. They wanted me to gain between 4-10 grams a day. I weighed in at 23lbs 8oz. Scales definitely vary because today at my pediatrician I weighed in at 23lbs 12oz. One ounce up from my last peds visit a few weeks ago. I had to have my blood drawn yesterday too. They ordered a CBC, PTHI, PT7, 25hd, ical, mag and phos, TIBC, and ferritin. Lots of stuff I know. I suggest you google it if you want to know more :) No changes were made to my medications. The team told Mom and me to keep doing what we are doing because whatever it is, it is working. Who would have thought that me, little yellow Ethiopian baby, would be where I am today. I never realized how sick I looked until I look back at my pictures. Wow, I was a "golden" boy...lol

I put comparison photos above just in case you don't remember what I used to look like.

I headed to the pediatrician today to get my Synagis injection. This will help protect me from getting RSV. I have to get this shot once a month until the spring. I was such a big boy I wore my face mask to both appointments. Mom said this would help prevent me from catching the other kids cooties! I had to be restrained by Mom's arms while Dr. Shah examined me. I squirmed and screamed so much there were broken blood vessels on the side of my face. I know this routine all too well. I hate when anyone in a lab coat or scrubs comes near me. Mom always reassures me they are there to help me. I say whatever crazy lady, they piss me off.

Time for my nap.

Ben

Boogies and Boo Boos

2009-11-09T15:15:00.005-05:00

Well I finally got my H1N1 vaccine today. The awesome nurse at my peds office saved me a single dose vaccine and called Mom to tell her they had it waiting for me. My nurse loves me because she was also my nurse at Beaumont and she remembers how sick I used to be and can't believe I have come so far. I went right in this afternoon with my mask on and got that nasty poke in my thigh. Mom goes later today to get her vaccine. Her doctor finally got the injectable vaccine too. Most places around here had the live nasal vaccine, but we can not get it because of my CF.

I had to go into the peds office this past Friday because I woke up from my nap and vomited and had a temperature of 101.4. The night before I did not sleep well at all. I woke up every few hours crying. I didn't have a temperature then, but it kicked in the next day. I also had a runny nose, but Mom thought maybe I was getting a few more teeth in. They did the nasal swab to test for H1N1 but it came back negative. The test only has a 60%-80% accuracy rate, but they still wrote me a script for TAMIFLU. My pediatrician did not want to take any chances on having whatever virus I had invade my lungs full force and cause me more issues. Mom and Dad were bummed that I got sick, but they have kept me from getting any colds and infections since I was born so that is pretty good. I am doing much better these last few days. Loud and crazy like usual.

I milked being sick and was nice and cozy on the couch. Dad even held my water so I could sip it.

My cat Cali slept in my chair while I was sick. Mom took a picture so she could show me. Naughty Cali in my big boy chair. I told her it doesn't say Cali on the chair it says Benjamin!

Boogies, boo boo's and no no's too,

Ben

Trick or Treat Elmo!

2009-10-31T21:41:00.004-04:00

I had a fabulous time on Halloween. I really enjoyed being dressed up as Elmo. I started out my night at my Grandma Carol and Papa Phil's. I thought it was really cool when Grandma gave me a bag of chips. I went out with Mom on our street. I liked most of the trick-or-treating, but I got scared at a few kids in masks. I cried and was not very happy about those frightening kids. I liked my Pez candy the best.

Goodnight and you monsters stay out of sight! And if someone can tell my Mom how to rotate the videos on the blog that would be cool.

Ben

Boy in a Pink Bow

2009-10-20T19:45:00.004-04:00

Well a lot has happened in the past month. I stayed at my Aunt Nicole and Uncle Todd's house the weekend of September 25th. This was the first time Mom and Dad left me for more than a few hours. Mom typed up a 12 page care plan that listed every medication I am on and how to do each and every treatment. They had Michelle and Jake's wedding up at Michigan State University. I had a blast with my cousins all weekend. Cousin Maddie put a pink bow in my hair and Uncle Todd sent the picture to Mom and Dad. I definitely looked liked I was having a wonderful time. This was a long overdue and much needed break for all of us. Mom always asks me if I get tired of looking at her old lady face everyday.

Since everything went well for my two nights at Aunt Nicole and Uncle Todd's, Mom and Dad left me the next weekend with Grandma Carol and Papa Phil for one night. They went to the MSU vs. U of M tailgate. This was the first tailgate they have been to together since I was born.

I now love to tell my parents "No" all the time. I am a dare devil and flip over my chair and climb on it and then it flips down on the floor. I laugh when Mom tells me not to do it. I come very close to jamming my face into the floor when I flip down. I think it is fun!

I have been getting a lot of teeth in now. It took a while for me to get most of my teeth, but they are all coming in at once. While I was brushing my teeth last night there was blood all over my toothbrush. Ouch!

I love to color. I sit with Mom and color in my coloring book. I have drawn on the office closet and on the wall a bit too. I am a real stinker.

High Five, Ben

My Results

2009-09-16T11:18:00.003-04:00

I cultured pseudomonas aeruginosa (PA) in my last throat culture. I had two clean ones and this third one would have given me a break from TOBI, but I started back on TOBI again today. I will continue to do the TOBI 28 days on and 28 days off until I get three clean cultures in a row. I get throat cultures every three months. So that is about another 9 months or so from now. Since it is not an exact science I might have never really gotten rid of the PA since I can not produce sputum for the doctors yet. They just make me gag when they swab my throat.

My kidney ultrasound came back normal so that was good. Nephrology will continue to follow about every 6 months just to make sure things stay normal.

I am getting so big Mom is starting to sell my little baby things. It makes her sad, but we have to make room for all my big boy stuff. We are trying to simplify life around here by purging the things.

I also saw my pediatrician last week and got the rest of my vaccines. Dr. Manistow said I am all set until I go to school. Mom said she doesn't even want to think about that yet. Way too soon for those thoughts.

Love, Big Ben

18 Months

2009-09-04T13:52:00.007-04:00

I will be 18 months old on September 10th! I can't believe all I have endured in this short amount of time. I am doing very well and had another great check-up with Dr. Nasr on September 3rd. I weighed in at 22lbs 5oz and was 31 3/4 inches tall. This put my weight in the 9th percentile and my height about the 20-25th percentile. They did a throat culture and if this one is negative for bacteria I will not have to do TOBI. I had a kidney ultrasound too. I haven't received the results yet, but I think they will be good. The ultrasound tech gave me a little DVD player with a Dragon Tales DVD to watch. I laid on my belly and pushed all the buttons while she examined my kidneys. I was such a good boy that Mom bought me a little Elmo at the hospital gift shop. I am a real big Elmo fan. I think I am going to be Elmo for Halloween.

I am developing pretty fast. I am running around and climbing on the furniture. I still love to throw balls and I can kick them well too. I love to read books or should I say turn the pages :0 I love to go to the grocery store and point to all the foods I know and love to eat. I saw Pop Tarts and raisins while at Target today. I made Mom open me a little box of raisins. I have this loud screeching noise I do that sometimes allows me to get my way. I am a real pickle.

I also went up north to Leland to stay at Honor's aunts cottage on Little Traverse Lake. It was just for a few days, but I had fun. I liked walking on the docks and looking at all the yachts. I made motor boat noises as we walked. It was a fun place to discover.

I am getting ready for football season. Go green! Go white!

Love, Ben

A Day to Celebrate!

2009-08-07T10:31:00.003-04:00

Mom just called Dr. Brown's office to get my lab results and everything is in normal range! This is the first time I have been born that all my labs have been right on! Here are the main ones we had concerns with.

PTHI (parathyroid hormone) Results: 47 Normal Range: 10-65

Vitamin D Results: 46 Normal Range: 25-80

Vitamin A Results: 279 Normal Range: 113-647

Vitamin E Results: 7.5 Normal Range: 3.8-18.4

Creatinine Results: 0.3 Normal Range: 0.10-0.60

On June 4th my PTHI was 89 and my vitamin D was 24. My PTHI was too high and my vitamin D was too low. We want to make sure I keep my vitamin levels in normal range, especially vitamin D so I can prevent early onset osteoporoisis which can happen with CF.

I think the beautiful sun helped me with my vitamin D levels. I was a baby vampire living in the hospital last year and never saw the sunlight. Vitamin D is a fat soluble vitamin. It is one that people with CF have a hard time absorbing and on top of that so do people with short gut. I am sure my supplements help, but I have been taking them since I was in the hospital last year. Mom puts me outside without sunscreen for about 15 minutes and then we apply it. If it is late afternoon I don't put any on. It was just on T.V. the other day that people in the U.S. are the most deficient in vitamin D. We apply so much SPF and never let ourselves absorb the healing sun rays.

I am defying the odds and wowing my parents and doctors.

I am the man! Ben

A+

2009-08-06T10:56:00.006-04:00

I had two doctor appointments at U of M yesterday. First, I met with Nephrology. They were happy with my progress. My last creatinine level was .2 and that is within normal range. They requested I have a renal ultrasound done to check my kidney size. They have no real concerns, but just want to make sure everything looks good. I then met with Dr. Brown. The entire intestinal rehabilitation team was impressed with my progress. I weighed in at 22 pounds 2 ounces. I was 31 inches long. My height was in the 25th percentile for my age and my weight was about the 10th percentile for my age. I gained an average of 8 grams a day since my last visit. They wanted me to gain between 4-10 grams a day. I was on the high side of their requirement!

I also had to have blood drawn for some labs. I was not a very happy boy when they had to do that. I screamed and cried the whole time. Mom had to hold me down on the table while the phelbotomist found a good vein. She did a good job and got me on the first poke.

Mom and Dad have some videos they want to post of me, but they won't download because the size is too big. They are trying to find a way to compress the files. The picture on my blog post today is my uncle Adam and me at the doctor office yesterday. He helped Mom while we spent the afternoon at the hospital.

Mom and Dad are finally going on their second date since I have come into this world. They are going to dinner and a movie tomorrow. Grandma Carol and Papa Phil are going to watch me. This date is long overdue.

Smiles, Ben

Daddy Day Care

2009-07-21T22:16:00.003-04:00

Mom got back last night from her long needed weekend away. She went camping in Wisconsin with her friends and went to the Dave Matthews Band concert. While she was away it was just me and Dad. Dad took me to run errands. We went to Costco and the grocery store. I played with my soccer ball while Dad watered the lawn. We worked on stacking blocks and I was able to stack 10! I got into all of my parents old CD's and thought it was cool. I had a great time at Daddy Day Care.

Our camera has been broken for a few weeks now and we finally got our new one in the mail this past weekend too. Dad took quite a few photos of me and a few videos.

I have learned to bark like a dog...more of a deep growl. Whenever I see a dog, I bark. We have a lot of dogs that walk by our house everyday so I get a lot of practice.

I love Elmo and I can say his name. I am working on Big Bird and the other Sesame Street gang. I can point out most of the characters in the Sesame Street books I have. I love to read and I especially like to turn the pages of the book.

July has been a great month. I do not have any scheduled doctor appointments! I start back on TOBI Thursday. Other than that things have been quiet and I like that. This summer was long overdue after last year's yucky summer.

Life is good. ~Ben

Summer Fun!

2009-06-29T07:48:00.005-04:00

I am really enjoying my summer. I had a clean throat culture, so if I get one more clean culture in September I will go off of TOBI. It is possible down the road I could have to go back on it, but my parents and I are loving this great news for now. I just ended my 28 days of TOBI, so I am free for 28 days. This free time is being well spent at the pool and outside. I love going to the pool and swimming. I cling onto Mom like a little monkey when I first get in, but I start to warm up to it. I love all the kids at the pool too. I always walk up to the bigger kids to play with. I am officially a walker and have been for about 4 weeks. I can stoop down to pick up my toys. I pop right back up and keep going. I never sit still. I make it very hard for my parents to do percussion on me. Making me sit on their lap for 20 minutes is not on my agenda. I have more important things to concur. Summer is grand.

~Ben

No More Broviac!

2009-06-12T15:15:00.004-04:00

On June 4th I had my broviac removed! I was not fond of going in for surgery, but it is finally great that I can be a free naked baby. I can be crazy in my baths now and splash as much as I want. I can go shirtless just in time for the summer heat! One less thing for Mom and Dad to worry about too.

My days now consist of 5 breathing treatments a day for about a total of 1 1/2 hours. I also get percussion 20 minutes twice a day. I am on the go so it is hard to keep me still for my percussion. I get mad, but it gets done. I got to see Dr. Nasr on June 8th. My appointment went well. I weighed in at 21 pounds 3 ounces. I was almost 30 inches long. I was such a good boy I even wore my face mask while I waited to be called in for my exam. The receptionist gave me some Sesame Street stickers and I thought that was pretty cool. I can say some words now too. My favorites are cat, cracker, and eye. I am just learning about my belly button since the broviac was removed. I think it is cool to put my finger in it.

Mom just bought me a few new foods to try from the health food store. She bought me a coconut milk ice cream and I am not sure about it because it is cold. Mom thinks it is even better than regular ice cream. I also tried falafel today and I liked that.

My Bama Beth came to visit me yesterday. It was nice to see her. She sat in the car with me, so Mom could run into the stores quickly and get what she needed.

I think I am going to head to the community pool this weekend to go swimming for the first time!

Splashes,
Ben

Happy Heart

2009-05-29T14:06:00.004-04:00

I had my echocardiogram and my infant pulmonary function test (IPFT) on Tuesday. They had to sedate me with chloral hydrate. It was an orange tasting medication I took orally. I had to get up at 5am and had to stay awake until my test at 9am. Grandma Carol went with Mom and me so she could keep me up while Mom drove us to Ann Arbor. I was sedated for about 2 hours for both tests. The small VSD that was present in my heart earlier has now closed! That was great news to hear. My cardiologist said he would not need to see me for any follow up appointments so that was good to hear. He did say he noticed I have a slight abnormality in the flow of my heart. It is called an Azygous which is a continuation of my IVC (inferior vena cava) to my right SVC (superior vena cava). This does not have any effect on my health. It is just information doctors would need to know if I ever required a heart catherization. My IPFT came out pretty well too. You can see me getting the test above. I had to have my head down like that so my airway would be as open as possible. My 25-75 Flows were at 106%. This is where they test the smaller airway function. My FVC (Forced Vital Capacity) was at 73%. They did notice I have mild restriction which could be caused by my smaller size compared to the "average" child my age without CF. I go see Dr. Nasr June 8th and she will explain more of the test to my Mom. The nurse said my results were good and there is nothing to worry about. I was a bit loopy after my test. I went to lunch with Mom and Grandma Carol and I was being silly dancing to the music at the restaurant. I passed out on the way home and slept most of the afternoon.

I start back on TOBI today. It adds another 40 minutes of breathing treatments to my day. It seems to be helping my lungs, so I will try and tolerate it.

I can walk when I try, but I tend to crawl most of the time. I love using my walker. Mom and Dad took it away from me for a few days, but I just crawled instead.

I am about 29 3/4 inches tall and about 21 pounds. I will try anything to eat. I like toffuti cheese and sausage patties. I have a sausage patty for breakfast every morning. I usually have some banana's or veggies with my sausage in the morning. I have tried tuna pasta salad and liked that. I also tried peanut butter for the first time the other day. I liked that a lot. Mom was nervous to have me try it because of my milk allergy. She had the EpiPen ready just in case. I did fine though, thankfully! It just gives me another delicious way to get in some fat and calories.

We had a nice Memorial Day Sunday at Aunt Olivia and Uncle Mehul's. I got to play with my buddy Nicholas. He had a cool ball pit, full of balls. I had fun throwing them out all over. Nick told me it was not nice. I thought it was cool so I continued to chuck them. It was great to see all of Mom and Dads friends that were there.

Sunny Smiles,

Ben

Great Strides 2009

2009-05-08T11:41:00.005-04:00

We had the Cystic Fibrosis Great Strides walk yesterday. The rain stopped a few hours before the walk. I stayed at home with Dad while Mom went to the walk. So many family and friends showed up to support me and my fight! My parents and I are so touched by each and everyone of you who have donated and walked to show your support. We definitely feel the love. It makes us hopeful that with this great support, from wonderful people like you ,we will find a cure.

I am doing very well. I am no longer on IV fluids. My blood results have been great without having the extra hydration. I am keeping myself well all on my own! Not being hooked up to a pump at night is great. I am up to 30.5 calories per ounce for my Elecare formula. Since I have a milk allergy I will probably be on the Elecare for quite a while. I can't have any milk products or products with milk proteins (casein, whey) in them. That is a lot of stuff. I am a mad man with my walker. I run with it and plow through anything in my way. I can stand on my own for a few seconds and then I plop down on my bum. I think that is a fun game to play...stand up, plop down, stand up, plop down. I am finally getting to sleep about 8-9 hours without having to wake up to be changed or eat. Mom loves that she can finally sleep for longer periods of time too. I am not on TOBI this month so that is a nice bonus as well. I don't have to be restricted as much during the day. At my age I like that. I hate when Mom and Dad make me sit still for my treatments. I am a very good boy for all the stuff I do have to do.

I also got my first haircut. Mom cut off my curl and saved it. Dad took the hair trimmer and tried to even up the sides. I liked the buzzing of the trimmer. I am really getting to be such a big boy.

Happy Spring!

Ben

Check me out!

2009-04-21T21:48:00.004-04:00

I am walking all over the house with the assistance of my walker. I get really excited and scream when I am on the go.

I had a great time in Atlanta visiting my Great Uncle Norm, Jerry, Ms. Jenny and her kids. I also got to hang out with my cousins, Josh and Maddie. Maddie was a big helper. My Aunt Nicole got me a cool Elmo Easter basket filled with all sorts of goodies. It even had a little blow up Bozo the clown. My hair is kind of like Bozo's hence the gift. I went to the Atlanta Zoo and was more interested in the people than the animals. It was a very packed day, so kids and adults were everywhere. I did very well on the car ride there and back. I watched a few Elmo DVDs and listened to my Curious George soundtrack. I even did my TOBI breathing treatments in the car.

The best part of the trip for Mom and Dad was when I woke up Easter morning. After I ate, I was laying in between Mom and Dad and I fell back asleep until 9:00 a.m.! That was the first time I have ever fallen asleep with them in their bed. I am so used to sleeping in my own bed I always think it is time to play whenever I am in their room.

I am getting outside for nice long walks whenever the sun is shinning. The past few days I have been saying, "Rain, rain, go away, come again some other day."

~Ben

Few Week Summary

2009-04-02T21:46:00.003-04:00

Well it has been a while since I last wrote. I am no longer on TPN! I still get sodium chloride bags every night for hydration. We are slowly weaning down on the volume infused as long as my labs come back with good numbers. Mom draws my blood every Monday and now we also have to draw it every Thursday to check my ionized calcium levels and phosphorus. I have to start a new medication for my vitamin deficiency. It is called Rocaltrol. We have to make sure these levels stay within normal range to prevent bad side effects. I am starting to eat a lot more big people food. I love fish and bologna. I had spaghetti and pasta sauce the other day and liked that a lot too. I am going to take my first trip with my parents for Easter. We are driving down to Atlanta to see my uncle Norm. Thankfully my Dad has a van so we can haul all my stuff...including my IV pole and medication cooler! Who knew a boy my size would need to pack so much stuff.

Go STATE!

Ben

Happy St. Patty's Day!

2009-03-17T15:39:00.003-04:00

I went for a nice long walk today! We walked to Rite Aid to pick up my scripts and to the bank to deposit my birthday money. My pharmacist couldn't believe how big I am. I wore my cool new shades and ate animals crackers while Mom pushed me in my stroller. I love being outside. It is a beautiful day!

~Ben

My 1st Birthday!

2009-03-12T11:55:00.004-04:00

Well I celebrated my first birthday on March 10! It was a bittersweet day because we had a funeral for my great grandma Madeline on the same day. I will miss you great grandma. I thought it was really cool when all the people at the funeral luncheon sang me happy birthday! I was all smiles...big cheese. I didn't like my cupcake...I threw most of it on the floor. It was a dairy free chocolate cupcake and I even gagged on it. Mom is going to try a new recipe for my little celebration with the whole family on Sunday. This time she is going to try vanilla with "butter" cream frosting. The chocolate cupcakes were from a box. I don't really like sweet foods anyhow. I love my liquid meats and my favorite veggie is peas. I am like an old man when it comes to taste. I love savory, salty foods...I need the extra sodium though so that is good. I could use the extra calories from the sweets though!

Mom and Dad didn't have their camera while we were out on my birthday so we don't have little video to share, but there were a couple of pictures from my grandmas camera. Mom and Dad told me they will get a video of me on Sunday.

The first year of my life has been one crazy ride, but I am doing very well now. I am getting my top two teeth and standing up all over the furniture. I think I will be walking soon. I am still a very good boy when I get put down for naps and bed time. I love to stand in my crib and play with my IV pump. I have to be careful though because I tend to wrap myself up in my tubing...kind of scares Mom and Dad. I also have a CD alarm clock that blinks 12:00 and I love to look at it. Just like Tom Hanks had a volleyball named Wilson I have an alarm clock named Sony.

Well I have to get back to my nap...I had to get three shots (Synagis (2) and Prevnar) yesterday and my teeth are killing me!

Life is good~

Ben

Grandpa gums

2009-03-05T14:44:00.007-05:00

I can't believe I will be one year old next Tuesday! It has been one heck of a year and I am happy to celebrate on a healthy path. I am down to two days of TPN a week. Hopefully by my next appointment with Dr. Brown (March 18th) I will be able to go off of it. I am still being hydrated with sodium chloride bags the other five days I am not on TPN. I am getting 25 calories per ounce of formula so we went up a calorie per ounce...slowly increasing. I love water so I drink about 6 ounces of water a day to help keep me hydrated and keep my kidney levels down. The more I drink the sooner I will be off of this darn IV hydration. Mom puts two diapers on me at night and a vinyl training pant. I still pee through that sometimes! Too many fluids if you ask me.

Today Mom and I did the TOBI dance! Today was our last day of 28 days on so now we have a break for 28 days before I am back on it. Yee-haw! That saves us about 45 minutes a day. I now only have to do three different breathing treatments a day compared to five. I like that.

I am getting my top two teeth. The other day my gums were bleeding and a piece was hanging off where those ouchy teeth were cutting through.

I love to eat big people food too. I have had chicken, hot dogs, McDonald's hash browns, ground beef, sweet potato fries, hummus, eggs, and sausage. I know some of those foods are not very good for you, but they are high in calories for me. I still eat my veggies and fruit to stay healthy. No dairy products or foods with milk proteins such as hey and casein. That eliminates a lot of fattening junk. There are many ways to substitute and improvise though.

I saw Dr. Nasr yesterday. I weighed in at 19 pounds 8 ounces! I am hoping I will be 20 pounds by my first birthday. They were very happy with my progress. Now that I am going to be one I will be on an every three month appointment schedule with her. My next appointment is scheduled for June.

I can pull myself up and I am getting the itch to walk. I have a walker and I like to try and use that to assist me in walking around the living room.

I think I am going to have my big boy car seats put in the car this weekend. I get to face forward soon too. I am excited for that.

I am off for a walk in my stroller! ~Ben

Crawling Man

2009-02-09T08:12:00.006-05:00

Well I haven't posted in a while and a lot has happened, so I will try to give you all a quick re-cap of the last month. I am about 18 1/2 pounds and 28 1/2 inches. I am getting big and can't believe I will be 11 months tomorrow. I had a few trips to the ER last weekend. On Friday the 30th I had an appointment with Dr. Nasr and that went well. Later that night when mom was getting ready to change my broviac dressing she noticed I had a small tear in the outer opening of my broviac. She called the on-call peds GI doc and they said it would be best to take me in to have it checked out because of the risk of infection. We knew the line was obviously weak because of the outer tear so we did not want it to open all the way. We got the the ER at about 8pm on Friday and then we had to be there until 4am. The peds surgeon on call was in a major surgery so we had to wait for him. It took them about 10 minutes to "repair" my line. Sunday night came along and Mom was getting ready to head out to some friends for the super bowl when Dad yelled for her help. I was crawling around on the floor and my line had come apart and I had blood all over. It would spew even faster out of my line because I was crying. Mom quickly washed her hands and tied a knot in my line. This stopped the blood flow. We quickly packed up to make another trip back to the ER. This time Mom talked to the peds GI on call and told them she and Dad wanted the darn thing out. Mom and Dad couldn't help but think...what if my line had come apart while I was sleeping and I bled to death. The risks are outweighing the benefits at this point in the game. Well because it was Sunday they would not take it out because it requires surgery to remove (not considered urgent) and Dr. Brown feels I still need it (more on that later). They did another "repair" and this time it seemed better. I am a mobile man and this makes it all the more riskier since I spend a lot of time on my belly. Also I am hooked up to my IV machine for 16 hours so Mom has to follow me around holding onto the machine and bag of fluid. She said this is silly and something needs to change.

My creatinine levels in my blood were high, so that can mean I am dehydrated. This is why Dr. Brown feels I still need fluids. We are not sure why all of a sudden I have there elevated levels. Because of this Mom draws my blood on Monday along with taking a sample of my urine to the lab. This allows them to do comparative ratios and keep an eye on my levels. The levels that they look at could affect my kidneys if they are high so that is why they don't want to take a risks and want me pumped full of IV fluids. I drink my formula, but the doctors said I must need extra right now because of my conditions. I see Dr. Brown this Wednesday, so hopefully Mom can discuss things further and we can come to a compromise on my care.

I saw an allergist on Monday Feb 2nd. I have had a few reactions to milk products to include butter and yogurt. I vomited on the yogurt and broke out in rashes around my face from both. Right now I have to stay away from products containing milk...that rules out a lot of things. I can't even have Goldfish crackers! I am still too young to get a reliable allergy test. The doctor said we can get blood now to run a few tests, but there are high chances for false negatives. We can do the needle tests when I am bigger. There is also the possibility that I could grow out of it which would be great. Dr. McMorris was who I saw and I really liked him. Mom had asked him if I could have more severe allergies to food because of my short gut since we don't have any history of food allergies in the family. He said it is probably more likely due to my stomach acids being altered from the Zantac and Zegrid I am on. There are always the goods and bads to all medical intervention. I have been on Zantac basically since birth. They put in in my TPN from the time I was born. I am still on it to help make my stomach neutral so the pancreatic enzymes can work better.

I also met with a Nephrologist (kidney doctor) on Friday Feb 6th. They agreed at this point that I needed more fluids based on my lad work. Mom was hoping they might have had something else to add to the reasons why or more of an explanation, but she didn't get what she wanted.

After my five visits to U of M this past week it was nice to take a break from that Maize and Blue place for a weekend. I have a peds well checkup tomorrow to get my Synagis vaccine and then off to Dr. Browns for full day at U of M again. I have yet to not spend over 4 hours there for one appointment. Pack your lunch and put on your crazy hat for that place.

Well life is good overall. I can't wait to see this white stuff melt and the green grow. Mom says the spring is a beautiful time of year and she is ready to put me in a jogging a stroller so we can both get out of hibernation.

Ben

Liquid Meat

2009-01-12T11:18:00.007-05:00

Well my surgery that I last posted about was cancelled. I was very happy about that. When Dr. Brown talked it over with Dr. Tittlebaum they decided to wait until I grow more before they put my broviac in further. The line is out a bit, but they felt it was in far enough for now. My echo will be on hold for now as well. They diluted my TPN solution, so the sugar concentration wouldn't scar my veins. I am still getting the same amount of calories from it, but more volume due to the dilution. Hopefully I will be off of TPN soon and that way we could schedule the surgery for removal! I am not growing as rapidly as I was, but I am still gaining. We had to switch to my Dad's insurance and the home nurse we had is not in our new network. Mom is now drawing my blood every Monday and she takes it to the lab at Beaumont. Thankfully she can draw my blood from my line and doesn't need to poke me! One benefit we get from the broviac. I started to eat pureed meats in hopes that would help me get more calories in. Mom mixes olive oil in with it. I really like the meats and so do my cats. They come and cry while Mom feeds me. I get a kick out of it. Mom and Dad tell me my stool smells of garbage now...very rotten garbage. I also got to try freeze dried apple bits and I like those. The only thing is with my short gut...I don't have much travel time for the apples to digest, so they come out whole. I also am trying a new enzyme, Creon 5, because my bum has a horrible rash we thought we would try and see if it makes any difference. Those little enzymes make my skin burn and bleed. Back to trying 50 different creams...from scripts to over the counter. My vitamin D levels were low again so we increased my ergocalciferol from .125ml to .25ml. My vitamin A and E levels were on the low end of the normal range so we have increased my AquaADEK vitamins from 1ml to 2ml's. I am also decreasing my Zantac and adding in omeprazole. These antacids help keep the acid in my stomach low so the enzymes can do their job. I finally off of TOBI for 28 days...that adds about one hour of free time to my days. I like that! We got a call today from Dr. Nasr and my throat culture from last week is showing that I still have PA...maybe the form of bacteria I have is resistant to the TOBI. I have a bit of a cough again too. The culture is not done growing, so Mom will call Dr. Nasr towards the end of the week and we will come up with a plan of action then. Please pray that my ugly PA bugs go away!

Ahhhhh....da da,

Ben

Bundle of new "firsts"

2009-01-01T10:33:00.004-05:00

Well I have experienced quite a bit these last few weeks. I got a bunch of gifts from that goofy guy I saw at the mall. I guess he isn't so scary after all. Mom and Dad made me dress up in a few outfits for Christmas like I was in a photo shoot.

I had my first power outage from Sunday morning until Tuesday afternoon. Dad had to go buy a generator because we had to keep all of my medications cold in my med fridge. I also had to be able to do my breathing treatments so we needed electricity to power my compressor. We have to sterilize my nebulizers after each use so we used these Medela micro steam bags in the microwave and had one lamp hooked up for light at night. I didn't know much of a difference, but Mom and Dad said this is how people used to live (minus our bit of power from the generator). Thankfully we had our gas fireplace to keep us warm. I loved seeing all of the candles and flashlights. We even made shadows puppets on the wall.

I was up late for my first New Years Eve to watch the ball drop. I was eating my ba ba while I watched TV and then Mom planted a big smooch on my cheek at midnight. I was whisked right back to bed after the festivities.

Well it is now 2009 and I have a lot more "firsts" look forward to. I will be turning one this year. I can't wait to actually be outside this spring and summer.

I also have some appointments this next week at U of M that I am not looking forward to. I have surgery scheduled on Jan 6th to have my broviac inserted back in to the original spot. It has come out over time. I probably haven't helped it since I like to grab at it any chance I get. Plus I have grown and with my chest cavity expanding that may have pushed it out a bit too. When I am in the recovery room from that surgery they will be performing an echo cardiogram on me. I had a visit with my cardiologist on Dec 22nd and they could still hear the heart murmur that I had when I was born. I have a small Ventricular Septal Defect (VSD) which is basically a hole in my heart. The echo will let the doctors know how big the hole actually is. The pictures will determine if I need surgery or if it will heal over time. I also have my monthly checkup with Dr. Nasr on Jan 7th. I think I have been behaving so she should be happy.

Wishing you a healthy, happy new year!

Ben

Merry Christmas

2008-12-20T19:06:00.003-05:00

I wish we could've sent a card and letter to everyone. Unfortunately, we ran out of time and cards.....we thought 160 would be enough. Merry Christmas!!

Christmas 2008
Dear Friends & Family,

We wanted to thank everyone for the incredible support you have given us throughout the past year. Thank you for always asking about Ben. Thank you for the food, hospital visits, e-mails, cards, phone calls, donations, gifts and everything else.

We cannot begin to express what a roller coaster this year was. It was filled with many highs and an unfortunate amount of lows. We’ve questioned many things along the way….our doctors, our strength, our faith. One thing that was never in doubt was the amazing network of family and friends that we have. The outpouring of love has been overwhelming.

Ben is the strongest person we have ever met. He has endured more in his first 9 months than we have dealt with in our lifetime. Throughout it all, he does it with a smile. His attitude is amazing despite the constant annoyances we put him through. He has taught us patience, compassion, empathy and several other things that were lacking. Isn’t it amazing that we’ve learned so much from someone who can’t talk? We are better people because of Ben. He is our hero.
As you can see in the photo Ben is doing great. He is steadily gaining weight and is over 16 lbs. He can stand with support and is cutting his first two teeth.

A dying man, Jim Valvano, gave an amazing speech about 15 years ago. I always loved the portion below. It was something I aspired to do but never really seemed to reach until Ben’s arrival. Ben has given us something special.

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.”

We only wish we could fully express to all of you how much your support and donations mean to us. As Ben fights everyday, it’s people like you that will help make the fight that much shorter. Every day brings us closer to a cure.

You can donate to the Cystic Fibrosis Foundation to make CF stand for Cure Found. Your donations are tax deductible. Ninety cents of every dollar goes directly to research. You can sign up to walk and/or make your donation through the link on Ben’s Blog (website address below). Any amount is greatly appreciated, nothing is too small.

We wish you and your loved ones a Merry Christmas and a Healthy New Year!
With Love, Chris and Kati

Peas with sugar on top

2008-12-14T14:31:00.007-05:00

I have been a busy boy. I am now a whopping 16lbs 10oz! I finally hit the 5th percentile for my weight! I am 27 1/2 inches in length. That puts me in the 25th percentile for height. I love eating my sweet potatoes, peas, and carrots. I get butter and brown sugar on top. Who wouldn't like that? I ate my veggies by themselves for the first few times and I still really liked them. Dad says for all of the times I have been "starved" I would probably eat hay.

I am cutting my first two teeth. One is through and the other is cutting through my gums right now. It does not feel very good. I can also stand up with support. I can sit on my own, but I don't really have an interest in crawling at this time.

Mom got a yucky call from the doctors last week. I had a cough so they did a throat culture and I have cultured pseudomonas aeruginosa (PA) (again) and klebsiella oxytoca. It is very important we eradicate the PA because if I were to colonize it that can affect my lung function and cause damage. I have to go back on the inhaled TOBI. I am on it for 28 days and off for 28 days for at least the next year. It takes about 25 minutes, twice a day for this treatment. Mom and Dad have to do a lot of entertaining while I get my treatment.

I am vitamin D deficient. That is common for most people with CF and can be common for people with short gut. Dr. Brown started me on a vitamin D supplement.

I am still on TPN 4 days a week. I have an appointment on December 23rd with Dr. Brown. Hopefully they will be very impressed with my weight gain and they will make the decision to take me off of TPN soon. I no longer get NG feeds at night. No more tube in my nose! Mom gets up with me during the week nights to feed me a few times. Dad helps on the weekends so Mom can get a bit more sleep.

I got to visit with Santa...I am not quite sure about that silly man.

I am a very happy guy. I go to bed so well...I have never fought it. I get excited to get in my crib and snuggle up with my bear blanket. I even play and chat in the morning and let Mom and Dad sleep in a bit.

Happy Holidays,

Ben

Bouncing Boy

2008-11-23T12:06:00.005-05:00

I am a very happy boy. I love to eat my cereal. I am now on the vanilla flavored Elecare formula. When mom mixes my makes my rice cereal with the vanilla formula and extra virgin organic coconut oil it smells and tastes like cake batter. I get excited when I watch Mom mixing it all up. Mom hopes this doesn't deter me from eating my veggies when I get to try those. I am starting to move around in my crib. Mom has to call the doctors tomorrow and ask what the next step is for the NG feeds. Since I have a tube running from the feeding bag into my crib and it attaches to the tube on my face. Mom and Dad worry I could roll over and wrap the tube around my neck. We took out the NG last night. We started doing night feeds by bottle last night. Mom got up at midnight, 3:00am, and Dad took the 6:00am feed. We have to make sure I get the night feeds because they add a lot of extra calories to help me grow. If I gain weight this way this should prevent me from having to get a G-tube. Keep your fingers crossed that this will work. I love the activity center my Great Grandma Pawloski bought for me. You can see me in it on video. Mom went to see her friend Laura in Chicago last weekend. Dad and I had a fun weekend together. Mom and Dad also had their first date night, just the two of them, since I have been home. They went to see a movie and had dinner on Friday. Grandma Carol watched me.

Bounces,

Ben

Mr. Independent

2008-11-10T18:06:00.006-05:00

I finally got to try rice cereal for the first time. I was so big I even held my own spoon. I am up to 23 k/cal formula. My TPN has gone down to 4 days a week. Soon we will add brown sugar and butter to my cereal, but Dr. Brown said one thing at a time. We want to add things slowly in case it causes any gut issues. I need extra calories because of my CF, so we always have to find creative (yummy) ways to keep me packing on the pounds. I am doing well and weigh 14 pounds. I have been a bit crabby lately and I like Mom and Dad to stand up with me. I know when they sit down and I let them know I do not like it. I think I might be teething and that is making me finicky. I saw snow for the first time today. I woke up and watched it fall through my bedroom window. I thought it was pretty neat.

High Five,

Ben

Happy Owl-Ween

2008-11-01T20:10:00.003-04:00

Well I was an owl for Halloween! I went to the Hedricks Halloween Party and hung out with my buddy Nick. Dad was Magnum PI and Mom was a Leprechaun. I went to two of my neighbors to trick or treat. I just showed them how cute my costume was since I can't eat candy yet. I am growing so big! I was 13 pounds 7 ounces on Wednesday this past week. I will get weighed tomorrow to see how many ounces I have gained. I can now hold my own bottle and I can clap my hands and give high fives. My vocabulary is expanding to a few syllables now too. I can sit up on my own, but only for short periods. I love to watch my cats. I am very curious about them. Mom and Dad said they are so proud of my accomplishments in these past few weeks.

Da Da Da

Ben

3 pounds in a month

2008-10-16T18:03:00.003-04:00

I went to see Dr. Brown yesterday and I weighed 12lbs 1oz! The intestinal rehabilitation team was very impressed with my coolness. I have been doing very well and growing like a champ. I have filled out a lot and I don't look like a white Ethiopian anymore. I am still on TPN and tube feeds at night. I will be on both of those for a while since it seems to be working. I am getting excited for Halloween. I have 6 costumes to pick from. Mom bought out all of the stores and we are not sure what I am going to be yet. Mom mentioned something about taking pictures of me in all of them so when I am older we will remember my first Halloween.

Life is good :)

Ben

Muscles

2008-10-07T16:10:00.003-04:00

I weighed 11lbs 4oz yesterday when the home nurse came to draw my blood. I am getting so big! I can now wear my 3-6 month clothes. I only have a little over a week to finish my three antibiotics. This is my first week I don't have any doctor appointments. I go see Dr. Brown next week. Each visit we have been lowering the calories I receive from the TPN. I sleep throughout the night now too. It helps that I am being feed through my NG tube all night. I now get 38 cc's per hour and tomorrow we will go up to 40 cc's per hour. I get about 100 cc's in my bottle 6 times a day. My hair and eyelashes have really started to grow. I am getting little curly wings on the side of my noggin. I finally got professional pictures done last week. Mom has to go pick them up this week. Dad came to the appointment. We had some family photos taken by Mr. Robert Bruce. He did my Mom and Dad's wedding. I did really well at my photo shoot.

Ben

Old Man

2008-09-29T14:48:00.002-04:00

Today is Dad's birthday! He is 33! He is getting old and I am getting big. I weigh 10lbs 8oz. I am actually getting a slight double chin. Mom and Dad are happy to see fat deposits. I am growing well at home. I pulled out my NG tube again last night. I am getting to be a sassy boy sometimes. I go see Dr. Nasr and Dr. Brown this Wednesday. I will continue to have weekly follow up appointments while I am on TPN and tube feeds.

Smiles, Ben

Thanks to the Jack Robb Golf League

2008-09-26T07:57:00.002-04:00

This is long overdue but I wanted to thank everyone from my Dad's golf league, especially Joe King, my Great Uncle Tom and Aunt Diane Hudson. They held a 50/50 raffle every week and surprised my Dad with nearly $1500 at the end of the year!! From what I've heard they're pretty bad golfers but they must be great people. I can't tell you how thankful we are to have such wonderful friends and family.

Thanks again,
Ben

Home=Gain

2008-09-22T16:41:00.002-04:00

Well I have been home eight days now. I have a home nurse visit me twice a week to take my blood for lab work. She weighs me too. She weighed me the day I came home and I was 9lbs. Four days later she weighed me on the same scale and I was 9lbs 15oz! The day of discharge Mom had a feeling the doctors weren't going to let me go home because I had not gained any consistent weight. Well thankfully Dr. Nasr was on duty that day. She came in on rounds and told us that the intestinal failure team (positive name huh?) wanted me to stay for 5 more days. Dr. Nasr knows Mom all too well and said she told the team that we were going to go home because she didn't want Mom to have a nervous breakdown. Mom was also going to tell them I needed more calories if I was going to gain. The team of doctors had also discussed that in the morning and I went up to 22 k/cal formula. I have hit a plateau for the past few days and have not gained very much. I go up by two cc's in my NG feeds tonight so hopefully that helps a bit. Hopefully I don't have to be on TPN much longer. My labs came back and my liver enzymes have been climbing at a quick rate. I have to go to U of M tomorrow to have an ultrasound done. I was at U of M today for a physical therapy evaluation. They said I am a little behind, but that is expected since I have spent about 4 months of my 6 months of life in the hospital. Plus I am underweight and when I catch up I should be just fine. The CF and intestinal doctors both see me on Wednesday. They will probably be adjusting my calorie intake because I am a bigger boy since they saw me a week ago. A whole pound bigger! Mom and Dad want to thank everyone again for the cards and gifts they still receive in the mail, the meals, the great messages I get on the blog and the thoughtful phone calls. These kind gestures constantly remind us of the great people and support we have pushing us through this tough tough journey life has tossed us.

Kicks and kisses,

Ben

More Meds

2008-09-13T16:29:00.003-04:00

Well my throat culture came back and I have cultured Pseudomonas aeruginosa (PA). I will have to take Cipro and Tobramycin (TOBI) to help eradicate it. The TOBI has to be inhaled through the nebulizer twice a day and the Cipro I take twice a day orally. I have to be on these for 1 month. Mom and Dad were sad to get this news today. Thankfully these two antibiotics can be administered at home. The Cipro can cause loose stools so they will wait another day before increasing my feeds. If I begin to get loose stools this should help them in deciding if it is the antibiotics or the increase in food volume that is causing loose stools. Tomorrow Mom and Dad get to practice putting the NG tube down my nose into my stomach. I am not very excited about this. Once it is in it can stay in for 30 days...that is if I don't pull it out which I like to do.

Drool and Bubbles,
Ben

Planning for Home

2008-09-09T12:00:00.003-04:00

Well we are working on my feeding plans right now and trying to find the right mix for me to be discharged on. The doctors told me I am going home on a mix of TPN, NG feeds, and oral feeds. They expect me to be hooked up to the TPN for about 16 hours a day. In my NG I am currently getting 24 cc's per hour of formula while I sleep. While I am awake I get to eat 72 cc's every 3 hours. Thankfully my TPN and formula pumps are somewhat small so I don't have to be stuck inside all day. Mom and Dad have a lot of training ahead of them in order to facilitate giving me the TPN and NG feeds at home. We have to be very careful when mixing and administering my TPN because there is a high risk for infection with Broviacs. The doctors have said no matter how cautious we are infection is eventually inevitable. HomeMed will be delivering a lot of supplies to my house for my at home nutrition. I have to have my own fridge for my TPN supplies. I will be taking over the house with my medical supplies. I am just happy I get to eat. I would like more because I give Mom a hard time after I suck down my 72 cc's. I always wonder where the rest of my food is.

~Ben

September 8th

2008-09-08T10:38:00.003-04:00

Everybody wish my Mom a Happy Birthday. She's getting old so make her feel better.

:)

Misbehaving

2008-09-03T20:28:00.003-04:00

Well I decided I did not want Mom to go on her trip to San Francisco. When Miss Tera came to baby sit me Thursday morning I had an unusual stool and Mom thought there might be blood present. She took my diaper to the pediatrician and it came up positive for blood in my stool. Mom and Miss Tera drove me straight to U of M Hospital to the ER. I had an NG tube put down my nose to help relieve some of the gas in my intestines. The x-rays didn't show much. They took my blood and did a bunch of tests and nothing came back positive for anything. Mom mentioned C-diff to the doctors and they said I wasn't presenting the "typical" symptoms. It is a simple test where they collect my stool and put it in a vial and send it to the lab for testing. Well after making me NPO (no feeds) for 6 days and putting me into surgery for a Broviac (google it) the doctors still did not have any idea of what was causing my bloody stools. GI recommended that they test me for C-diff and when I finally had a poop yesterday they collected my stool and send it to be tested for C-diff. Well today the test came back positive. Mom and Dad were very upset that we could have tested for this the first day I was admitted to the hospital. I have gone 6 days with out eating and I have lost 1 whole pound! I was almost 10 pounds when I was admitted and now I am about 8 lbs 14 oz. It has been a torturous 6 days for me and it has made mom cry. I love to eat and the TPN I am on is not taking the hunger away. Due to my history of NEC they began treating me Thursday night with the 3 antibiotics I was on before. Right now there is some inconsistency with the 3 teams that are treating me. Mom will discuss things further with them tomorrow and voice her opinion some more. I think there are too many cooks in the kitchen right now and Mom may request to just be in contact with my primary team, Dr. Nasr.

Where is the milk man?

~Ben

Great Appointment!

2008-08-21T12:48:00.002-04:00

I went to see Dr. Nasr and Dr. Lumeng at U of M yesterday for my monthly checkup. It was a very busy office. They were seeing 45 patients yesterday and 14 of whom had CF. My weight was 9.03 lbs. My dietitian was very happy with my weight gain. She told mom she knew the Elecare formula was what I really needed more of and was glad Mom had made the transition. She said with all of the trauma and massive bowel resection I had that the elemental formula was best for me. Mom and Dad know this is a God send when it comes to me gaining weight. Thankfully after the many discussions with insurance it seems my formula is being covered. It is $55 a can! I will be going through about 12 cans a month. Who said babies were cheap :) It has to be sent to the house from a medical supplier since you can't buy it off the shelf at the grocery store. They did another throat culture since I seemed to be coughing a little bit more. Hopefully it will come back with just normal oral flora. I was referred to physical therapy to help me work on my strength. Since I have some weight catching up to do this will just help to make sure I am on track with my physical development. After my long morning and afternoon trek to U of M, I went to the Detroit Zoo last night. I met my buddies, Jake, Nick, Ryan and Josh there. I slept through most of the excursion. It was a nice cool night for a stroll.

Life is good.

Ben

Chatty Cathy

2008-08-07T14:14:00.004-04:00

I am such a talkative boy. I sometimes would rather talk than eat my bottle. I have been getting more formula feeds because I seem to put on the weight faster. I was 8 lbs 8 oz. last night! I slept for eight hours last night! The only bad thing about that was when I was weighed this morning I was 7 lbs 15 oz, after dad changed my extremely full diaper. Mom and Dad may need to wake me up in the middle of the night to feed me once. My weight is so sensitive. Mom is currently starting to wean herself from breast pumping. She is trying to do it twice a day since I have started to eat more formula. We have a deep freezer full, so we should have enough breast milk to last me at least 3 more months. Mom is sad about making this transition, but knows we have to do what works best at this point. I will still get some breast milk everyday, so hopefully the immunities will help keep me healthy as I grow bigger. I got to meet my Great Uncle Gord and Aunt Claire. They had their baby shower last Sunday. My Cousin Emma held me too. She even took one of my pacifiers for herself. I didn't mind though. I love to suck on my two middle fingers more. I was over stimulated that day with all of the new faces.

Love, Ben

Bump in the road

2008-07-28T18:14:00.004-04:00

I scared my parents last Tuesday. I projectile vomited a few times and Mom didn't know what to do. She decided to take me to the Beaumont ER. They ran a few x-rays and it looked as if I had a partial obstruction in my intestines. There is an area of dilated loop and a visible adhesion. This has probably been there for a while. It seems as if food is slow to move through this area. It is just going to take a while for my body to really heal and smooth out the kinks. I wasn't able to eat for over 24 hours and that was just torture for Mom. She tried to comfort me all night, but I was a hungry boy. I had 7 IV's started until they finally got one in my head to work. That did not make me, Mom or Dad very happy. Mom and Dad were bummed they even decided to take me, but they didn't want to chance anything. Luckily I was discharged the next afternoon. I am back to eating like a champ and trying to gain the 5 ounces I lost in the hospital. I will be weighed tonight to see where I am. My labs came back and all of my numbers are trending in the right direction! My direct bili went from 5.4 to 4.3. My hemoglobin went up to 11.4 from 9.2. My body is finally starting to repair itself! My throat culture came back with normal oral flora so that was great news too. Hopefully the early intervention and preventative treatments for my CF will keep me very healthy and strong.

Smiles, Ben

Poopy Pantalones

2008-07-17T08:56:00.003-04:00

I have been pooping too much (average 9 poops a day) so the doctors increased my enzymes to 2 capsules before each feed. Dr. Nasr is in China on vacation so I met with Dr. Lumeng yesterday. I only weighed 7 lbs. 11 oz. at my checkup yesterday. That means on average I have only gained about 11 grams a day since my last visit. I should be gaining about 25-30 grams a day. Hope my dietitian changed 2 of my 7 feeds to all Elecare formula. We will try this for a while in hopes I gain weight at a good rate. If I don't we may possibly have to go on all Elecare for a while. The doctors want me to gain a good amount of weight especially before the winter so I am healthy in order to fight off infections. I am getting about 183 kilocalories/kg per day and the average baby gets about 108 kilocalories/kg per day. I am definitely getting adequate amounts of calories, but with my short gut (malabsorption) and the CF (malabsorption) I am having a hard time holding on to my feeds and absorbing them. My Zantac was changed to Prilosec. Dr. Lumeng said he sees more success with the Prilosec for controlling the acid. This helps with correctly digesting the enzymes. I had blood drawn to check my bilirubin levels and my hemoglobin. I should have the results in the next few days. I also had a throat culture done to make sure I haven't colonized any bacteria. The results for that will be in next week. They will do a throat culture every three months. I am four months now! I love stroller rides. Mom took me on one a few days ago and it didn't last very long because I pooped through my clothes and on my stroller.

Love, Ben

Sleeping in my crib

2008-07-08T14:10:00.002-04:00

I slept in my crib for the first time the past two nights. I do so well sleeping in my big boy bed. I sleep for about 5 hours at a time. I wasn't gaining for the past few days so Mom called Dr. Nasr. The dietitian changed my formulation to 1 1/2 teaspoons of Elecare added to my breast milk. I was a hungry boy so I was getting 110 cc's of breast milk and with the increase in liquid and not with an increase in my formula I was only getting 23 k/cal breast milk instead of 24 k/cal. Mom and Dad are now tracking my poops because I seem to be pooping too much again. The doctors don't want me to poop over 6 times a day and I have been. They may need to adjust the enzymes too. I was laughing up a storm this morning. I love to tell stories and I have so much to say.

Giggles, Ben

Growing Growing

2008-07-02T16:23:00.002-04:00

I am now 7 lbs 7 oz. My appointment with Dr. Nasr went well. I will go see her in another month to make sure I am behaving. Mom and Dad bought a scale for home so they could check my weight every few days. I have been out and about. I went for a walk with my buddy Jake and Aunt Kate. I went to my Aunt Tera's engagement party. I got to visit my cousins, Josh and Maddie, at their house. I love car rides. Mom took me through the car wash yesterday.

Coos and Smiles, Ben

So Big

2008-06-24T05:36:00.002-04:00

I weigh 7 lbs 2 oz! I finally passed the 7 lb mark! My potion is working. I am so happy to be at home. I sleep very well about 4-5 hours at a time during the night. I have caught Cali in my bed a few more times...since I haven't slept in it yet :o I sleep in Mom and Dads room in my bassinet. I have slept with Mom on the couch a few times.

Love, Ben

Home!

2008-06-20T13:11:00.002-04:00

I am at home! I am so happy to be at home with Mom and Dad and my two pesky cats. Cali was caught sleeping in my crib! I was downstairs sleeping in my pack n play. I know she wouldn't have hopped in there if had been in there sleeping. I did really well for my first night home. I only woke up to eat a few times. I am getting so big. I weighed 6lbs 14oz when I left the hospital yesterday. I am almost 7lbs! I will get weighed at the pediatricians office on Monday. I go back to see Dr. Nasr on Thursday for a follow up appointment. I think I may go for a walk tonight. It is great to be a free man.

Smiles and Giggles, Ben

6/17/08

2008-06-17T10:16:00.002-04:00

The doctors are still trying to work on the right potion to try and get me to gain weight. I am getting 3 oz. of breast milk about every 3 hours. They have increased my enzymes to 1 1/2 capsules before each feed. I am getting 1/2 teaspoon of elecare formula added to my breast milk to add more calories. If I start to gain weight this way I will get to go home soon. I weigh 3.070 KG (6 lbs 12 oz) and I have been the same weight for the past three days. I also get the fat soluble vitamins ADEK and Iron added to my milk. I am on zantac for acid reflux. My labs came back and everything looks good. My direct bili has lowered from 5.8 to 5.4 so the phenobarbital I am taking is helping keep it down a bit. I am doing well with my breathing treatments and my chest percussion's.

Smiles, Ben

6/12/08

2008-06-12T07:03:00.002-04:00

I had to move to a shared room a few days ago. They needed to isolate someone so I had to move. I am doing pretty well. I am up to 80 cc's every three hours just 10 cc's shy of 3 oz. I started enzymes yesterday. I get one full caspsule before every feed. Hopes are the enzymes will help me gain weight. I had a busy day yesterday and I had my circumsicion and a sweat test. I should get my results from the sweat test today. I also got my genetic test back and they found the second mutation. We already knew I had the DF508 and the other mutation is IVS7+1G>A. This is a rare mutation. I could possibly be the only person in the world with this mutation. It is unknown if I will have a milder case of CF or more severe. We are pretty sure I am pancreatic insufficient since I was born with the meconium ileus. Just to check they are doing a fecal elastase study on my poop. Being pancreatic insufficient means my pancreas doesn't produce as many of the enzymes I need to digest my food. I need an extra boost with the enzyme capsules.

Love, Ben

Food is good!

2008-06-06T11:23:00.002-04:00

My upper GI came back and it presented no issues! This was great news and the doctor's started my feeding plan on June 4th. I am up to 45 cc's of breast milk right now! My feeds are increased by 5 cc's every other feed with a goal of 80 cc's, almost 3 oz. They are slowly lowering my TPN as my feeds increase. I had lost a bit of weight last night and I was at 6lbs 9 oz. The doctors said they expect that while they are adjusting my feeds for the next few days. Once I am on full feeds I should be gaining more. They said if I don't they will have to make adjustments. One possibility is adding human milk fortifier which would add 4 k/cals to my breast milk. That doesn't sound like much, but for babies it is a decent amount of added calories. Because of my digestive issues they want to first see if I can just gain weight on full feeds because adding things to my diet could have negative affects on me. Overall I am a happy little man in my new digs!

Smiles, Ben

My new digs

2008-06-03T05:14:00.002-04:00

I have my own room at the hospital. I even have a TV, the first TV I have ever had at the hospital. Mom said she can finally have a taste of what is going on in the world. I watched Ellen with her yesterday. Mom cried the first night she had to leave me in that room because the doors to my room have to remain closed to prevent infections (there are all sorts of children on 5 west with upper respiratory bugs). She asked the nurses how they were going to hear me cry and they said they could put a baby monitor in my room and put the receiver outside in the hallway. I am glad she asked because I hate to be without my pacifier for too long. Dr. Nasr comes to see me almost everyday and I sure do like her. I have an upper GI scheduled for today. I will drink some barium and they will do various x-rays to see how my intestines are doing. I am off of antibiotics as of yesterday so that is good. Once the doctors get the results from the GI study they will start to increase my feeds if everything is looking good. They are going to go very slow with my feeds this time. Dr. Nasr said I better behave :)

~Ben

5/30/08

2008-05-30T09:58:00.002-04:00

I got to start feeds yesterday. I get 5 cc's every 3 hours of full strength breast milk. I will finish my antibiotics on Monday. I am still on the full amount of TPN and the breast milk is added calories. I am supposed to move to the Pediatric ICU today. Mom and Dad were very upset the other night because the baby next to me tested positive for MRSA and that made them very uneasy. Mom talked to the doctors and told them about her concerns and the baby was eventually moved last night. I need to try and stay as healthy as possible while I am trying to grow.

~Ben

5/27/08

2008-05-27T14:48:00.002-04:00

I am still on TPN for my nutrition. I have 6 days left of antibiotics and then hopefully they will start to slowly feed me. Mom gives me a little bit of breast milk each time she pumps and I like that. I have a suction tube in my nose that goes into my stomach still so I don't digest the 1cc she gives me. I do like the taste though. Tomorrow they will draw blood to send to the Mayo Clinic for my full genetic screen. This test should find the other CF gene. Mom met Cameron today. She said he is a cute little boy and he has a lot of energy. When a cure is found I hope to meet Cameron too.

~Ben

5/24/08

2008-05-24T08:27:00.002-04:00

I have settled in at the U of M NICU. It is physically quite the change from Beaumont. Mom and Dad say we went from the Four Seasons to Motel 6. I have babies about 3 feet from each side of me. There are about 14 babies crammed in this small room. I have a big boy bed. Mom said she may climb in it and take a nap with me...lol. The doctors and nurses have been great though. I finally got to meet Dr. Nasr. I am still not eating and I am on full TPN. They will try and start feeds in the next 10-14 days. I am still on my antibiotics to treat the Necrotizing Enterocolitis (NEC). I also got another PICC Line in my arm and I have a suction tube back in my nose to help keep the air out of my stomach. Dr. Nasr ordered me to start my Albuterol inhalants today. I will get them twice a day. She said my lungs sound good, but this is all preventative treatment. Dr. Nasr said my biggest problem right now is gaining weight and I have to put meat on my bones. The harder it is for me to gain the more susceptible it makes my immune system.

Love, Ben

5/20/08

2008-05-20T08:37:00.002-04:00

Sunday night I projectile vomited and Mom new something wasn't right. She called the nurse over and told her she was scared. I seemed very lethargic too. The doctors stopped my feeds and put me back on TPN. I had x-rays done right away and they thought there was free air present in my abdomen again. They decided there was air in my bowel wall again and not inside my abdomen. Both situations are not good, but if it were in my abdomen they would have had to performed emergency surgery again. They believe I have an area in my intestine where bacteria grows and produces gas that somehow moves into my intestinal wall where it should not be. Like a pond that is stagnant and grows bacteria. I am on three antibiotics and I have an IV in my head again. They will just monitor me and try to clear the infection. Mom and Dad are sick to their stomachs. It is hard for them to see me like this again. I can not eat and that upsets me and my parents. They feel helpless. I might be moved to U of M sometime this week.

Ben

5/18/08

2008-05-18T20:01:00.002-04:00

I have been put on a predigested formula, Nutramigen, to hopefully try and help me gain weight. I get to breast feed a few times a day in between feedings to give me some extra calories. Mom was sad we had to try this, but it was better than putting me on TPN. TPN would be a quick fix and it only has negative effects on my liver. My bilirubin is 4.4, the highest it has been. The doctors want to get my stool, feedings, and bicarb normal before they start treating my bili. I am still having some loose liquid stools and now that I am getting this formula I have vomited three times. I don't burp as well now that I have started this formula. The doctors are doing an ultrasound tomorrow on my stomach to rule out vomiting caused from Pyloric Stenosis. This is the enlargement of the valve connecting the stomach and small intestine. Mom and Dad hope this is not the case because I would need another surgery. I will be 11 weeks old tomorrow.

~Ben

Change in Plans

2008-05-15T09:21:00.003-04:00

The doctors do not want to send me home because my stools are loose and basically absorbing into my diaper and I am not gaining weight. My bicarb levels came back at 14 which is low. The doctors are concerned with dehydration. We have stopped the enzymes and I am just eating breast milk. The doctors have lowered my food intake a bit because there could be a concern that I am "dumping". I will be closely monitored the next few days and if my stools do not change and I do not gain we will have to look at other ways of adding calories. My mom told the doctors she does not want me back on TPN and that is the last option.

~Ben

5/14/08

2008-05-14T10:08:00.003-04:00

I am now eating as much as I want about every three hours. I had two bottles of breast milk yesterday that each had 120 cc's (4 oz.)! I was hungry in the morning. I also get to breast feed so mom feeds me during the day. I am now getting my enzymes before each meal. Back to eating applesauce. The doctors have talked about me going home tomorrow! I can't wait to finally go for a stroller ride.

Love, Ben

5/12/08

2008-05-12T11:12:00.002-04:00

I am currently on 38 cc's of breast milk every two hours. I am off of TPN since last night. Now I am just trying to talk the doctors into giving me more food. The little 3lb 9 oz. girl next to me gets more per feed than me! The doctors are doing rounds as we speak so hopefully they will be over soon. I am now in the big shared pod again. They had to move me yesterday because a 31 week old baby needed my room. This is hopefully a sign I should be going home again soon.

Later, Ben

5/10/08

2008-05-10T08:12:00.003-04:00

I am already eating 30 cc's (one ounce) of full strength breast milk every two hours. That means I get a total of 12 ounces per day. I am still on TPN and I am currently getting 18 cc's per hour through my IV. The doctors have been giving me more than I ever had because I had only been losing weight. I gained about an ounce a day when I was home. The day of surgery I was 6 pounds 8 oz. After surgery and days at the hospital I was down to 5 pounds 15 oz. I am now 6 pounds 5 oz. I am doing very well with my feeds. I will eventually go back on my enzymes once I get to full feeds. I hope to be out enjoying the sunshine soon.

Mom, Dad, and I want to thank everyone for their support at the CF walk yesterday. We are overwhelmed by the love and support all of you have shown us. Mom was happy to see so many friends and family there yesterday. It makes Mom tear up. If we can continue this each an every year we will only get closer and closer to finding a cure.

Smiles, Ben

5/7/08

2008-05-07T09:49:00.002-04:00

I get to eat today! I will get half strength breast milk (breast milk diluted with sterilized water). The doctors still haven't decided on an amount, but they will be on rounds soon and they will have made a decision. Yesterday they said 1/2 ounce to a full ounce for the first feed. I get to start off with a bottle and bypass the yucky gavage tube. I am no longer on antibiotics. My blood cultures for sepsis have come back negative so that was great news. If my feedings go well hopefully I will be going home in the next two or three weeks.

Love, Ben

5/5/08

2008-05-05T18:19:00.002-04:00

I no longer have the tube going into my mouth down into my stomach. I am only hooked to the monitor and I have an IV for my TPN. I am losing weight so hopefully they will start feeding me soon. The doctors said 7-10 days since surgery. Tomorrow will be 7 days. I am a very angry boy since I can not eat. My pacifier only satisfies me for so long. It is all about patience and waiting for now.

Ben

5/2/08

2008-05-02T07:10:00.004-04:00

After a few bouts of projectile vomitting and the pediatrician checking my stool for blood I was rushed to the ER on Tuesday. I had x-rays done and air was found in my bowel walls. This required me to have emergency surgery. The air being present signalled to the doctors that I probably had a perforation. They could not find one. It could have been so small or already healed over. He smoothed out some intestinal kinks and cut open a part to sew it in order to make that portion of my bowel wider. I made it out of surgery. I was taken off the ventilator yesterday. I am still on Fentanyl for pain. Infection was present in my intestines, so I am on three antibiotics for about two weeks. There is major concern for sepsis in the blood, but so far my cultures have come back negative. Mom finally got to hold me last night. It helped to calm me a bit. I have not been sleeping much. I am very mad I can not eat. I am back on TPN for nutrition, but I want some real food. I have more tubes connected to me now than I ever did. I have the suction tube back in my mouth to keep all fluids from entering my intestines. This allows them to rest and heal. Mom and Dad are very sad to see me go through this again. The doctors said these types of things can just happen because the amount of intestine I have remaining is floppy.

Ben

$&#@!!!!!

2008-04-29T19:24:00.003-04:00

Back at the hospital. Ben just underwent surgery again on his small intestine. We'll keep everyone posted.

Chris and Kati

Home Run!

2008-04-25T08:34:00.003-04:00

It is official! I am going home today! I am so excited to see the world. Mom and Dad are so ecstatic to put me in my car seat for that first ride home. They are ready to give up the studio apartment at Beaumont. We want to thank all of the great nurses and doctors that have watched over me the past 6 1/2 weeks. They have really done an outstanding job caring for me. Mom said she is nervous because now it will just be her and Dad taking care of me. Her full time "nannies" won't be around at night. Mom said it is a bittersweet moment because this has been our life for the past month and a half, but she is ok with saying goodbye to it. Dad, Mom, and I want to thank all of our family, friends, and new people that have walked into our lives for their awesome support. We are so grateful to have you all in our lives.

I will be going to U of M May 1st for my first meeting with Dr. Nasr.

It's a beautiful day, Ben

Home on the Horizion

2008-04-23T05:23:00.003-04:00

The gavage tube and PICC Line have been removed! I am only hooked up to the heart monitor that all babies in the NICU are connected to for safety reasons. All of my feedings have been changed to bottle and breast. It is looking like I may be home by the weekend if my feeds continue to go well. Mom and Dad were so ecstatic to hear this. My bilirubin count is high, so I had to have an ultrasound done yesterday. The doctors said my liver size looks normal, but they were not able to see everything they needed to see. They may do another test, but haven't decided on the next step. I am on Phenobarbital to help lower my bili count. I am also on an iron supplement because my iron is low.

I can't wait to breathe fresh air for the first time and go on my first car ride.

Smiles, Ben

4/21/08

2008-04-21T02:13:00.003-04:00

My feeds have gone up to 57 cc's. The feedings have changed from continuous to bolus feeds. A syringe is connected to the tube in my nose and it is held above my head. With the force of gravity it goes into my stomach. Hopefully in the next few days they will just be bottle feeding me the breast milk. I am ready to have the tube removed from my nose. The nurses said the bolus and bottle feeds both take about the same time for me to eat. This doesn't make much sense to Mom (or the nurses), so Mom asked the doctors about it. They said they want to make sure I am not "dumping" my milk before going to bottle. They said if I tolerate this well we should be going to bottle very soon. I got to breast feed again and did very well. We monitor my intake by weighing me on a precise scale before and after I breast feed. I have a really bad diaper rash from the enzymes. My bottom skin was actually bleeding. The nurses have made a mix of desitin and this pink calamine like powder that they coat on my skin. It seems to be helping a bit.

Mom, Dad, and I had a nice surprise visit from Cameron's mom, Ms. Debi, today. Cameron is my new friend that has CF too. They were very pleased to have met Ms. Debi. She has provided a lot of good advice and support.

Love, Ben

4/18/08

2008-04-18T22:25:00.002-04:00

Today my feedings were increased to 55 cc's for one hour and then two hours off. I am getting fed 8 times a day for a total of 440 cc's or 14.6 ounces. I even got to breastfeed at 5:30pm today in combination with breast milk from a bottle. I did not get fed through my gavage tube at this feeding at all. I should be able to continue doing this for one feeding a day and eventually more if I am tolerating it well. Mom and I also did more Kangaroo Care today. It helps soothe my upset tummy. Mom asked the doctors about walking me today too. They said she could bring in my stroller and walk me down the hall. After my 5:30pm feeding Mom and Dad both held me without being connected to my monitor and they walked me around my pod. I had a great day!

Smiles, Ben

4/17/08

2008-04-17T09:19:00.005-04:00

I started my Ultrase enzymes on April 15th. I have been taking them like a champ. I get the little enzyme beads in a tiny bit of applesauce. Mom puts them on a spoon or on her gloved finger. I then get to wash them down with 10 cc's of breast milk. I get these 30 minutes before each feeding. Mom calls it my dessert before dinner. I am now getting 48 cc's of breast milk over 1 hour then 1 1/2 hours of no feedings. The 10cc's I get with my applesauce comes out of that amount. My overall volume for the day decreased from 456cc's to 432cc's. This is is the only way to get more volume in a smaller amount of time without over loading my belly. The goal is to get me on larger volumes with longer breaks in between my meals, just like most people eat. I started getting my fat soluble vitamins (A,D,E,K) yesterday. I get them once a day. These are put in my gavage tube while eating. The color is a bright orange and it changes the color of my pee to orange.

Mom and Dad gave me a bath last night and I pee'd on them twice. Once while getting weighed and then again after I was all dressed and clean. I am just preparing them for when I go home.

Love, Ben

4/14/08

2008-04-14T21:18:00.003-04:00

The doctors are condensing my feedings. I am getting 38cc's of breast milk (a little over an ounce) every other hour. I get a total of 15.2 ounces a day. I have lost weight the past three days. I now weigh 5 pounds 14 ounces. The doctors are deciding on the next course of action. My enzymes were supposed to be started today. They are in the pharmacy, but I have not received them yet. They will have to give them to me in tiny bit of applesauce. A one month old eating a bit of solid food!

I had a nice warm bath today and loved it! When I had my bath I was on my food break. I wasn't hooked up to the food pump and I had the monitor stickers off. Mom actually got to hold me with no tubes! We walked around after my warm bath and I was wrapped in a heated towel. It was very nice. She told me about being outside since I have never been. The sun was shining nice and bright today. I can't wait to feel the nice breezes and go for walks in my stroller.

Mom, Dad, and I are thrilled to see the donations climbing in support of a cure!

Love, Ben

4/11/08

2008-04-11T19:41:00.002-04:00

I am officially off of TPN! If I continue to tolerate my feeds I will not have to go back on it. I am up to 19 cc's of breast milk per hour. Tomorrow they will start to condense my feedings. I may be given 60 cc's over 2 1/2 hours. Then I wouldn't get fed for half an hour. I will start getting enzymes in my breast milk on Monday. These enzymes will help me break down the fats, proteins, and carbohydrates in my food. Most people with CF need these enzymes to help them digest their food. Mucus inhibits the pancreas natural production of the enzymes.

Love, Ben

4/10/08

2008-04-10T06:29:00.003-04:00

I just woke up a half hour ago. I slept through most of the night. Mom just called to check on me and I am being rocked by the nurse. The nurse calls me her cuddle bug. I was weighed last night and I am now 6 pounds! My breast milk went up to 15.6 cc's per hour. I am still on continuous drip through the tube in my nose. My TPN is down to 3.3 cc's per hour. I am not sure I like it in my new pod. I don't have my own room anymore and it sure is loud in here. The little preemie girl next to me makes her monitor beep all the time. Yesterday my mom came back from lunch with my Great Grandpa and Grandma Robke and I was crying. I had pulled the tube out of my nose. It was hard for Mom and my great grandparents to watch the nurse put it back in. His first try did not work. He had the tube in, but it had folded inside. I think my nasal passage and throat got pretty scratched up. I was crying like my mom had never heard before. Mom was very upset and told the nurse to add some ointment onto the tube like she has seen them do before. He did and it slide in much easier. I also got some sugar water to help calm me down.

I am hoping for an increase in my feeds again today. I'll keep you posted.

Love, Ben

4/8/08

2008-04-07T21:27:00.002-04:00

I am four weeks and one day old today. My feedings went up to 14.6 cc's per hour. I now weigh 5lbs 15oz. Almost to the 6 pound mark! I am going to be moved from my very own room to a big hostel type room with other babies tonight. This means I am doing better, so they feel I am ok to moving to the big pod. Hopefully one step closer to making my way out of here. The doctors said I should be completely off of TPN in the next 3-4 days if I can tolerate my increases in breast milk throughout the week.

Mom and Dad gave me a bath last night and I loved it. No sponge bath this time. I actually got to sit in the warm water and relax. I just had to leave my PICC line arm out of the water, but the nurse held it for me.

Love, Ben

4/6/08

2008-04-06T14:59:00.004-04:00

I am up to 12 cc's of breast milk per hour today! I am now weigh a whopping 5lbs 13 oz! My TPN is down to 6.6 cc's per hour. Last night I was allowed to do a non-nutritive feed with my mom (she pumps and then I can try and feed). I latched on like a pro. I root all the time, so the nurses said I wouldn't have a problem. The nurses love me. My dad walked in the room yesterday and they were holding me and taking pictures of me with the Polaroid camera. I am a ladies man.

~Ben

4/5/08

2008-04-05T12:45:00.002-04:00

Yesterday my mom finally got to give me a bath! My mom massaged oil into my scalp with my baby brush to help with my cradle cap. I loved my massage. Once I was done with my bath my mom massaged lotion into my feet. I was very relaxed after that. She told me she pays a lot to have that kind of treatment for herself. After my bath, I took a snooze from 1pm-3pm, with my mom. I am up to 11 cc's of breast milk. It is still on continuous drip into my stomach from the tube in my nose. In the next few weeks they should try and start volume feeding. I am up to 5lbs 12oz. My second genetic test came back and they have still not found my second mutation. The test looked for 97 mutations. There are over 1,500 mutations. When I get to U of M they will do additional genetic tests to find my other mutation.

Love, Ben

4/3/08

2008-04-03T23:09:00.002-04:00

My feeds have increased to 9 cc's per hour. I am getting more breast milk than TPN. I have not spit up in over a day and I am continuing to poop. I toot pretty loud too. Things are progressing very well.

My Great Strides Team is doing an amazing job. Everyone's generosity towards finding a cure is overwhelming. Keep up the good work.

Goodnight, Ben

4/2/08

2008-04-02T08:33:00.004-04:00

Yesterday the doctors increased my feeds to 6 cc's per hour. I now weigh 5lbs 8 ounces. One ounce above my birth weight! My mom was able to change three of my poopy diapers yesterday! I usually spit up a bit when I am trying to poop. The doctors said that can be attributed to the meconium ileus I was born with. My body is just trying to figure out how to work.

Mom and Dad got in touch with Dr. Nasr from U of M and they want to be involved with my treatment now. Mom and Dad have requested that my current doctors coordinate my current care with the CF center at U of M. They would begin certain treatments for my CF now.

Thank you to all who have contributed to the Cystic Fibrosis Foundation and who have joined my Great Strides Team! My parents are touched by every one's support. Your generosity brings us closer to a cure.

Love, Ben

3/31/08

2008-03-31T18:50:00.002-04:00

I now weigh 5lbs 6 oz! I am almost back to my birth weight! I vomited early this morning while pooping at the same time. Then I vomited one more time after that, so the doctors stopped my feeds. They ordered an x-ray and everything came back okay. They began continuous feeds again at 10:00 am rounds this morning. I have kept the breast milk down for the day. I am getting 4cc's every hour. They have lowered my TPN because I am getting more breast milk. I pulled the gavage tube out of my nose this afternoon (tube that pushes the breast milk from my nose into my stomach). My mom had to leave the room while they put it back in. She hates to hear me scream while they insert it. I took a nap with my mom this afternoon. I love to snuggle.

My mom, dad, and I want to thank everyone again for your thoughts, prayers, and support. I am growing more each day and getting stronger.

Love, Ben

3/29/08

2008-03-29T12:01:00.004-04:00

Happy Saturday. So far I have been able to keep my feedings down. This morning the Doctors even increased them to 2cc per hour. Almost 2 oz per day!!

My parents created a Great Strides CF team for me. If you would like to join Ben's Buddies please follow the directions in the column to the right. My Mom and Dad are doing the Downtown Detroit Riverwalk site and would love for you to join them. Hopefully I will be able to join them too. If you plan on doing the walk select 'JOIN MY TEAM'. As the date approaches we will have a spot for everyone to meet. Also, my Dad is not smart. He screwed up and set my personal goal to $0 and can't figure out how to change it.

Finally, I had a big stinky brown poop at around noon ;)

3/28/08

2008-03-28T09:36:00.002-04:00

Yesterday I pooped out the green mucus the nurses had been aspirating from my stomach. It looks as if my intestines might be moving in the right direction. The nurses talked about throwing a pizza party in my honor. Mom and Dad were so excited when they changed my diaper. The doctors may start feedings again today. My Uncle Adam came to visit me all the way from Hawaii yesterday. He showed up in flip flops and shorts. Really silly since we got snow.

Mom and Dad will be here in a bit to see me. I will update everyone later on my day.

Love, Ben

3/27/08

2008-03-27T09:42:00.005-04:00

Yesterday they stopped my feedings because the nurses were still pulling a good amount of yellow/green bile from my stomach. The doctors ordered another x-ray. I had a barium enema and I didn't even make a sound. I was so good for the Radiologist. I did pee on the table, but everyone thought it was funny. The barium moved and there seems to be no blockage. The doctors seem to think the bile is backing up into my stomach because my intestines are not fully healed yet. The small intestines move the food down by natural muscle contractions called peristalsis. The doctors think the lack of peristalsis is what is causing the back up. They did resume feedings last night through the tube in my nose. I am getting one cc every hour. The doctor's told Mom and Dad it is realistic that I will be in the hospital for another 6 weeks. This was difficult news, but they are trying to be positive and hope it happens much sooner.

Mom and Dad are in contact with Dr. Nasr from U of M. Cameron's mom Debi has e-mailed my Dad and put him in touch with Dr. Nasr. She is a well renowned doctor who treats CF. Mom and Dad want to make sure I start getting treated for my CF as soon as possible. My mom is on her way up to see me so she will get this mornings update.

Love, Ben

3/25/08

2008-03-25T22:59:00.005-04:00

I got to eat today!!! I am being fed every six hours. A total of 5 cc's, half breast milk diluted with half sterilized water. Not much, but I sure do love the taste. My binky has been my only source of satisfaction, so I was very excited today. My mom fed me at noon and at 6:00pm today. I have been able to keep the breast milk down. If continue to digest it I will get pure breast milk tomorrow. I had the sweat chloride test done today and the results were a 62. Anything above a 60 means it tested positive for the Cystic Fibrosis. I also had a new IV put in today. This allowed the nurses to draw my blood for the second genetic screening that tests for 97 CF mutations. It should take about a week for the test results. This test should locate the second mutation. My hemoglobin was low this morning, so I also had to have a blood transfusion today.

My mom and I watched a movie this afternoon. I actually slept, but occasionally opened one eye to make sure she was still there. I love to have people around.

:) Ben