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
13 comments:
You are getting closer and closer to coming home! Way to go peanut butter! See you soon! Tell mom and dad we said Hi! Love, Auntie Annie and Cousin Emma
Hey guys, just was catching up on the status of your little one...our hearts go out to you. As a point of interest, one of my kids' past teachers has CF and is now in her 40's. She had an experimental lung transplant through U of M last year and has been doing great. You would never know her medical history if you met her today. Hang in there and our prayers and thoughts are with you guys.. The Rusby's
Hi Little Ben, Kati, and Chris: Thank you very much for the up date and we are so happy things are inproving one day at a time. You are all in our thoughts and prayers daily and if there is any thing you need or want please give a call. Love, prayers, hugs and kisses to all of you. Great grandpa and grandma Robke
Hey Buddy,
Uncle Bryan and I are coming to visit you tonight, we can't wait. I'm so glad to hear you are doing good and gaining weight, go Ben! I love the picture of you in your Tigers cap, too cute. See you soon!
Love,
Aunt Tera
Hey Mister,
I am going to come visit you tomorrow, i was going to come with Tera and Brian tonight but I have stinky Chemistry class. I am glad to hear you are continuing to eat and poop. See ya tomorrow, get some rest so we can chat:-P
Love-Angela
Benjamin,
I love seeing all the pictures on your blog. You sure do have a beautiful family. Keep up the good work little guy. Lots of love to you and of course your mommy and daddy. Uncle Scott and I are coming to see you on Saturday. Can't wait. Love, GREAT Uncle Scott, Aunt Jane, Grant, Emily, Sara and Oscar too. xoxoxoxoxo
Hey Ben,
I think you need to do something with that Tiger's team of yours...let's see a win here!
Keep eating and pooping and gaining weight...you're doing great!
love,
shell
Hi Beautiful Benjamin, Love the Tiger hat, but the team needs a little help. You are doing great and are getting more precious every day. Good night sweetheart, sleep tight, Hugs and Kisses, Grandma Carol & Papa Phil
Ben,
I'm just checking in on your progress. It is good to see that things are moving along well. Literally and figuratively as evidenced by the poopy diapers :). This life has its ups and downs. You are just getting the bad times out of the way early and the rest of you life will filled with joy and happiness.
Love,
Curt & Pam Pawloski
Hi there Ben!
The thing about your body trying to figure out how it works and the spitting/pooping phenomenon is an amazing thing that will hopefully work itself out real soon. And when you get older, your body will be trying to figure out how to drink a lot of beer without getting chubby. It's like it never ends!
My shower is this weekend so I'm not sure if I'll be able to come see you, but next Thursday we should make a date (I'm TDY M-W). What do you say?
Have a great weekend and I will see you soon.
Love, hugs & bugs, xoxo, Aunt Carin
We are so very glad to hear of your positive progress! You have a lot of love out here waiting for you little Ben! I know one boy named Jonah who can't wait to be friends! All our Love...
Sean, Vicky, & Jonah
Dear Benjamine, Mom and Dad Too!
I've only tried to leave 4 blogs and none have gone through. Maybe this time. We just want to say "Keep up the good work" and those 'brown poops'!!
You've come a long way since you were born and I know that you will be able to "Keep walking in the Rain".
Uncle Rich found his ring. Boy was he lucky. It fell out of his pocket at a resturant that we ate at after visiting you and your parents.
See you soon. Much Love and Kisses from Uncle Rich, Aunt Margo and Kaitlyn and Matt too!! XOXO
Dear Ben,
I'm a friend of your Aunt Nicole's and she has been keeping me posted on your progress. I just wanted you to know that you and your parents have been in my prayers and it makes me very happy to hear you are growing stronger everyday. Keep up the good work with the poops. Tell your mom and dad if they ever need anything, I'm just up the road.
God Bless - Tamra "Tammy" Haurani
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