New Year, New Heavier Ben

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

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

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

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

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

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

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