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
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
10 comments:
Ben, you are growing so much. We are so proud of you! Keep up the good work and get rid of that PA. Yeah, Santa is a silly man, and kind of funny looking huh. Give Mom and Dad hugs for me.
Love,
Jen Sweets
Good Morning Sweetheart,
We are so sad you are sick again and on medication, but we are happy you are growing so big. Love all your new pictures; they make us smile. God Bless you, mommy and daddy - we love you with all our hearts. Hugs and kisses, Grandma Carol and Papa Phil
Wishing you and your parents all the blessings of Christmas and good fortune and health in 2009.
Dear Baby Benjamin,
We love your new pictures. You'll learn a lot more about Santa in a few more years and we're sure you'll decide he is an OK guy.
Be a sport and take that medication so you can keep growing strong. Wish we could wave that magic wand and make all your troubles disappear.
Merry First Christmas,
Aunt Kathy & Uncle Mike
Ben you are getting to be such a big boy!! We are so glad to hear that you continue to grow. Trinity loves sweet potatoes too, but she don't get the sweets on top! We think of you guys often and hope that you have a wonderful 1st Christmas, don't get to spoiled by santa (or Grandma and Grandpa)!!
Love,
Shannon, Miranda, Aubree, and Trinity Arthur
Hi Ben,
Sorry it's been a while since I checked in! You are going to love your 1st christmas! I can't wait for Santa to come and EVERYTHING I see on TV I tell my mom I want Santa to bring me that...for whatever reason I got a lecture that Santa can't bring everything!!
I am also on TOBI...I'm off right now and go back on in January! I used to get mad, but now I don't mind it so much...I still don't like my vest and sometimes make my parents crazy with my complaints! Remember my advice...always keep them on their toes!
Wishing you and your family a very Merry Christmas and a Happy and HEALTHY New Year!
Your friend, Cameron Hain
Hi Ben - I just love the new picture - your smile put a big smile on my face. Keep eating those veggies and gaining that weight. Sorry you have to go back on the other meds, but I know you can handle it.
Wishing you, your Mom and Dad the BEST Christmas and a happy, healthier New Year! Judy, Carl and Sean
Hi Little Ben: Grandma Kay and I just got back from seeing the Lindbloms and Great Uncle Gordie and Great Aunt Claire and new baby Reagan Alison Robke.All sent their love. We are happy to hear of your weight gain but sorry to hear of the current problem but happy to hear you are home. Uncle Tim and Aunt Molly sent some Christmas gifts for you and your Mommy and Daddy. We hope to get them to you one way or another and hope to see you soon. We know Santa will be good to you. Hugs and kisses to all of you. Love, Great Grandma and Great Grandpa Robke
Benjamin
Merry Christmas! You are just the most beautiful baby I've seen in a long, long time. Have fun on Christmas Day. We all love you very much.
Love & Kisses
Uncle Rich, Aunt Margo, Matt & Kaitlyn
XOXOXOXOXXOXXOXOXOXOXXOXOXOXOXOX
ben - it's great that you are growing so big still! keep up with all your treatments though so you can get better and keep doing so well. haha - i wonder about santa sometimes too...hes such a sneaky guy - i just can't figure out how he does his job! i hope that you and your mom and your dad have a wonderful christmas...& i'm sure your parents already told you, but santa LOVES milk and cookies..so make sure you don't forget to leave him some out!
lots of love
meghan
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