The doctors are condensing my feedings. I am getting 38cc's of breast milk (a little over an ounce) every other hour. I get a total of 15.2 ounces a day. I have lost weight the past three days. I now weigh 5 pounds 14 ounces. The doctors are deciding on the next course of action. My enzymes were supposed to be started today. They are in the pharmacy, but I have not received them yet. They will have to give them to me in tiny bit of applesauce. A one month old eating a bit of solid food!
I had a nice warm bath today and loved it! When I had my bath I was on my food break. I wasn't hooked up to the food pump and I had the monitor stickers off. Mom actually got to hold me with no tubes! We walked around after my warm bath and I was wrapped in a heated towel. It was very nice. She told me about being outside since I have never been. The sun was shining nice and bright today. I can't wait to feel the nice breezes and go for walks in my stroller.
Mom, Dad, and I are thrilled to see the donations climbing in support of a cure!
Love, Ben
10 comments:
Hey Buddy!
So glad to see your progress is improving daily. It been a week since I left and I miss holding and hanging out with you and your mommy in the hospital. I must say I'm a very fortunate uncle to have such a beautiful nephew. I think about you everyday.
Much love Benjamin
Uncle Adam
p.s. Tell your mom and dad I miss and love them too.
Aunt Jane is so proud of you Benjamin Anthony. You are such a strong little guy. I can't wait to come see you again maybe this time I will hold you and kiss all over you. Hi to mommy and daddy. Lots of love,
Aunt Jane
Hi Ben,
I'm so thrilled with your progess, you truly do amaze me. Pretty soon you will be outside enjoying the beautiful sunshine. I can't wait because I'm going to come over and walk with you and your mommy all the time! Tell your mommy and daddy hello, I will be up this week to visit all of you!
Love,
Aunt Tera
Good Morning Beautiful Baby,
Hope you got the enzymes and applesauce last night. Everyone asks how you are doing and loves to look at your pictures. We can't wait until you are home and can take a stroll with your mom and dad. Keep up the good work, Love you bunches, Grandma Carol & Papa Phil
Hi my name is Jenny Pinardo. I live in Toledo Ohio and have a 6 year old son named Sal with CF. He also had a meconium illeus at birth and was dx with CF @10 days old. Over the past weekend we held a charity event for CF and for the year we were able to raise $110,000 for the cystic Fibrosis Foundation. I am convinced that they will be able to find new advancements for our kids that's why we keep raising money!It is so commendable that you have already created a walk team! I wish you guys the best of luck! we have a website www.salspals.com all our info is there! Till there's a cure- Jenny Pinardo
Hey Little Guy !!!
We were so glad that you are improving every day. It's great that you are "officially" off the TPN. Hooray !!!
I had to sprinkle Matthew's medicine on applesauce when he was 11 months old. I guess that's something they do for you little guys. I'll have to ask your mom how you liked the applesauce.
Maybe Grandma, Linda and myself will be able to see you on Saturday.
Have a good week! Love Aunt Margo and Uncle Richard XOXOXOX
Hi Little Ben,
Uncle Norman here, glad to see your getting better every day and off the TPN. I bet it felt great to have all the wires off for a while. I know your mama loved holding just you without the wires. I think about you every day and know you are in great hands. Hope to see you soon. Hi to Mom and Dad.
Take care little guy..
Love you,
Uncle Norman
Ben"jammin"
We have been checking on your progress everyday. We love you very much. Keep on eating and getting stronger everyday little man. Soon you will get to go with mom and dad and enjoy some of that sunshine.
You are in our prayers everyday!!
Love Uncle Gord and Great Aunt Claire
Ben,
You look so big in your pictures, I wish I could be there to meet you. Keep eating and getting stronger and you'll be outside to see the sunshine in no time! Tell your mom and dad that I miss them.
love,
shell
Hi honey!
Just wanted to let you know that I was thinking about you!! You are such a strong little bugger.....
Love you buddy!!
Aunt Jess
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