I got to eat today!!! I am being fed every six hours. A total of 5 cc's, half breast milk diluted with half sterilized water. Not much, but I sure do love the taste. My binky has been my only source of satisfaction, so I was very excited today. My mom fed me at noon and at 6:00pm today. I have been able to keep the breast milk down. If continue to digest it I will get pure breast milk tomorrow. I had the sweat chloride test done today and the results were a 62. Anything above a 60 means it tested positive for the Cystic Fibrosis. I also had a new IV put in today. This allowed the nurses to draw my blood for the second genetic screening that tests for 97 CF mutations. It should take about a week for the test results. This test should locate the second mutation. My hemoglobin was low this morning, so I also had to have a blood transfusion today.
My mom and I watched a movie this afternoon. I actually slept, but occasionally opened one eye to make sure she was still there. I love to have people around.
:) Ben
15 comments:
Hey Ben,
This is great news that you are eating again. I just found out that your buddy Nick is already making plans for you to join him in Brazil for a High Calorie Brazilian Rodizio. It is funny because he seems to only want to go to the one that is over looking the beach in Rio, go figure!
Love,
Tom, Julia, and Nicholas
Hi Ben,
I'm so glad that you got to eat today! Just keep that appetite up, feeding others is one of your mom's favorite past times and she has some darn good recipes...so eat everything she gives you!
'til tomorrow,
shell
Alright Ben! I'm so glad you finally got to enjoy some of that stuff your mommy has been working so hard to give. Shell's right, your mom is a mean cook so just think, it only gets better. I miss you little guy, hope to see you soon.
Take care,
Aunt Tera
Good morning Benjamin,
I have to say, I am so impressed with your vocabulary! Words like mutation and hemoglobin are pretty huge for a guy your age!
Aunt Tera and I prayed real hard for you to have your 24 hours so you can eat - and it sounds like pretty good news! I'm going to do some extra hard praying today, too, so you can get some more eating done.
Tell your mom that you want some milk and some orange juice. She'll get it!
Love you little guy - hope to see you tomorrow.
xoxo, Aunt Carin
Yeah Ben! That makes me so happy that you got and get to eat some of that good stuff! It only gets better from here on out! Bama Beth(as cousin Emma would say)taught her kids pretty well on how to cook, so you will thoroughly enjoy everything you eat from now on! Keep up the good work...Also, I know we will continue to only here good news from you! You're doing so well and we Love you so much!
XOXO~ Cousin Emma and Auntie Annie
Hey Ben,
My name is Cameron and I'm a 4 year old with CF. I wanted to send you a message to tell you CF isn't so bad. Just be sure to do everything the doctors tell you and you'll do great....of course you'll need to give your parents some trouble! My mom and dad found out I had CF when I was in my mom's tummy. They were very scared and when I was born I had a blockage too. I'm now a crazy 4 year old that likes to ride my scooter and run loops around the house. Sometimes my parents look at me in amazement and wonder where I get all my energy. I also go to preschool and like it a lot.
My mom said if your mom and dad need to talk to anyone they can call them or email them. They know just how your parents are feeling.
We are praying for you everynight.
Your new friend Cameron!
Little Ben: We are happy you are doing better and hope it will continue. We are keeping you, your mommy and daddy in our prayers daily. Hope to see you soon. We enjoy your blog so keep writing. Love you, Great grandma and grandpa Robke
hey peanut! I am being a bad typrt because your buddy Jake wants to type too. How was lunch today? Did you keep it in your tummy? Well, it is getting warmer outside and the sun came out for a little while today. It won't be long before you, your mommy, Jake, and I will be out going for walks. Have a good day today and I will see you tommorrow.
Love, Aunt Katie
b;iug (and Jake too!)
Hey Ben,
We are so happy to hear some good news! You have been in our thoughts and prayers everyday. We can't wait to meet you.....you are just too cute!!
You look really cute with those bunny ears on! I tried to put some on Mason for a picture but he wasn't such a good boy like you.....maybe next year I'll try again!! Love you SO much!
Love,
Jeanne and Jay
Hey Ben,
We are so happy that you are eating! What a relief for mommy and daddy. We have been thinking about you and praying for you everyday. We can't wait to meet you!!!
Hopefully soon you can meet Logan and Delaney; they love to look at your pictures.
Love,
Jen
Hi Chris, Kati and Baby Benjamin,
We are praying that you can come home soon. Keep up the good work on the eating! The girls and I pray for you every night. Take care.
Love,
Norino, Leanne, Marissa and Lexi
Hello Our Beautiful Baby,
We just got home from visiting you, and we miss you already. Tell your mommy and daddy we love them too, and we will be with them in whatever they decide is best for you. You will have lots of visitors tomorrow and your Uncle Adam is coming all the way from Hawaii to see you, so we'll see you on Friday (if we can wait that long). God Bless you precious boy, get a good nights rest. Love you with all our hearts - hugs and kisses, Papa Phil, Grandma Carol and Great Grandma P.
Hey Ben "jammin"
Keep eating little man. Eating well is a right of passage in your family so keep up the good work!
We are so excited to meet you and see you in July.
We might even need to catch a Tigers game. What is your prediction for the Tigers this year? You have been amazing with your predictions about the Spartans and march madness? Keep on keepin on big guy!!
Love
Great Aunt Claire and Gord
Hey Handsome!
I had a great chuckle reading your Aunt Annie's meesage about Bamma and food. One of the first right of passages I learned from Bama was while cooking bacon one must stick the fork in and fish the crispy bacon bits out. Then, the fork is licked while smoking hot mind you; one must have the white fork prongs (burnt) on the tongue to really enjoy!
Sending love and hugs to all
The Rapsons
Kati, Chris e Benjamin,
Do Brasil enviamos nossas preces,desejando que fiquem bem, com muita saúde e alegria.
Com carinho,
Aderbal, Regina e Luisa Moura
Post a Comment