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