Merry Christmas

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

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

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

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

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

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

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