I can't believe I will be one year old next Tuesday! It has been one heck of a year and I am happy to celebrate on a healthy path. I am down to two days of TPN a week. Hopefully by my next appointment with Dr. Brown (March 18th) I will be able to go off of it. I am still being hydrated with sodium chloride bags the other five days I am not on TPN. I am getting 25 calories per ounce of formula so we went up a calorie per ounce...slowly increasing. I love water so I drink about 6 ounces of water a day to help keep me hydrated and keep my kidney levels down. The more I drink the sooner I will be off of this darn IV hydration. Mom puts two diapers on me at night and a vinyl training pant. I still pee through that sometimes! Too many fluids if you ask me.
Today Mom and I did the TOBI dance! Today was our last day of 28 days on so now we have a break for 28 days before I am back on it. Yee-haw! That saves us about 45 minutes a day. I now only have to do three different breathing treatments a day compared to five. I like that.
I am getting my top two teeth. The other day my gums were bleeding and a piece was hanging off where those ouchy teeth were cutting through.
I love to eat big people food too. I have had chicken, hot dogs, McDonald's hash browns, ground beef, sweet potato fries, hummus, eggs, and sausage. I know some of those foods are not very good for you, but they are high in calories for me. I still eat my veggies and fruit to stay healthy. No dairy products or foods with milk proteins such as hey and casein. That eliminates a lot of fattening junk. There are many ways to substitute and improvise though.
I saw Dr. Nasr yesterday. I weighed in at 19 pounds 8 ounces! I am hoping I will be 20 pounds by my first birthday. They were very happy with my progress. Now that I am going to be one I will be on an every three month appointment schedule with her. My next appointment is scheduled for June.
I can pull myself up and I am getting the itch to walk. I have a walker and I like to try and use that to assist me in walking around the living room.
I think I am going to have my big boy car seats put in the car this weekend. I get to face forward soon too. I am excited for that.
I am off for a walk in my stroller! ~Ben
18 comments:
GOOD JOB BENNIE! IT'S SO GOOD TO HERE THAT YOUR FEELING BETTER.EVERYONE PLEASE PRAY FOR BENNIES GRANDMA, SHE NEEDS ARE PRAYERS, LOVE DIANE KRESEVICH
Hey Big Boy!
You look so good! I love the old school tigers shirt! They better do well this year! If not we will still be there cheering for them! Can't wait to see you soon. We can't wait to celebrate the big 1 with you! Love you tons! Love, Auntie Annie
Dear Ben
Glad to hear so much good news!about you. Take car and much love from Uncle Richard and Aunt Margo
XOXOXOXOXOX
Ben! Love to see those smiles... and as you know, my mommy is a sucker for cheeks! If you smile, she will give you great hugs and goodies. It works every time :) I will meet you outside for a walk soon. See ya in the sunshine!
Love Jakey (J & K too!)
PS. Happy Birthday! The best part is sitting forward in the car - Enjoy!
Hi Ben,
I can't believe it's been almost a year since we've met! I'm saying happy birthday to you a little early because I have to get my nose fixed this week and my mom isn't sure if we'll have time log on! I'm so happy you are getting big and almost walking! Just wait until you walk....talk about stressing your mom and dad out!! It's great...they constantly chase you and you can just run!
I hope you get a big piece of cake and be sure to make a HUGE mess...that's what we do best!!
I'll be out of commission for a while so my nose can heal, but I'll check in soon!
Happy Birthday my friend!!
Cameron Hain
Yay Ben! You are amazing. I cannot believe how much you weigh! More than your friend Anna and she is two months older than you. Sounds like you are doing very well. I love seeing your cousin Josh during his gym class on Mondays. We always talk about you. Take care, The Stecker's
HAPPY BIRTHDAY TO YOU HAPPY BIRTHDAY TO YOU MAY THE DEAR LORD BLESS BENJAMIN HAPPY BIRTHDAY TO YOUUUUUUUUUUU! God bless hope to see you soon, Love Diane K
Happy Birthday Ben!
My sister works with your mom. I've been following you all along and we've been praying for you. We're really happy your getting so big! God Bless you and your mom and dad!
Happy 1st Birthday!
Your friends down south,
Kim and Safe Harbor Church
Benny! I can't believe you are one year old tomorrow! I will be stopping by at some point to wish you a Happy B-day, maybe if it's nice me and mom will go for a walk! We love ya Ben...the Balcoms
Hey Ben, it's Aunt Carin. I hope you enjoy your first birthday tomorrow! I also hope mom & dad give you a cake for you to smear all over the place!
You're going to love birthdays. You get one EVERY year! And people give you presents, too, so that's pretty awesome. This year I got you a donation for your walk, and I promise to do so every year for your birthday until a cure is found - is that a deal?
Well, I've got some good news! I'm finally off the steroids so I can come see you soon! It's been a long nine months, that's for sure, and not seeing you was the toughest part :( (a close second is all the stupid weight I've gained because of the stinkin' things...want to borrow about 40 pounds?!)
I'll call you (or your mom) real soon and we'll catch up.
Love you oodles & gobs & tons little stinker! xoxoxo
Happy 1st Birthday Benjamin. Hope this day is the best ever...... We love you. The Domines'
HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY, DEAR ADORABLE, STRONG, LOVEABLE BEN...HAPPY ONE YEAR BIRTHDAY TO YOU!
You are always on my mind. I am so happy for this day, except whenever I think of you the last few days I immediately start singing the words to Ben..."with a friend to call my own, I'll never feel alone, and you in turn will see, you've got a friend in me". Very true. You have made so many friends in this one year date. Keep growing, loving, and doing what you do best...encouraging others to be the best they can be. Lots love and stuff...Mary-Mary and da boyz xoxoxoxoxoxooxoxoxoxoxoxooxoxoxoxox
Happy Birthday Ben! Aunt Tera is going to come over soon so she can give you your present, Uncle Bryan has been anxious to see you as well! Have a wonderful day!
Love,
Aunt Tera
HAPPY #1 BIRTHDAY, BEN. CONGRATULATIONS ON YOUR GREAT PROGESS.
We are happy that you have achieved great strides this year toward managing (with your parents persistence) your health.
Have a wonderful day. Love, Uncle Todd's parents, Rollin and Crystal
Happy 1st Birthday Ben!
It's been quite a year, but like the little trooper you are, you've made it through with flying colors! I'm so happy for you and your Mom and Dad!
Hope you get to eat lots of cake on your special day!
Keep on taking those steps forward!
Love, Judy, Carl and Sean
Happy Birthday Big Boy! Also congrats on the big boy seat! Aunt Kati sent a picture of you in it! Can't wait to see you on Sunday! Love, Cousin Emma XOXOXO
Love you lots! ~Auntie Annie
Great to get the news and so happy things are going well. We are looking forward to our visit on Sunday. Happy 1st Birthday. We love you. Great grandma & great grandpa Robke
Happy Birthday Ben!! (Sorry I'm a day late). You've come a long way in a year, and you're looking as adorable as ever!! I hope you enjoyed some birthday cake yesterday and got lots of good stuff to play with! I know it's been a tough year for you and your Mom and Dad, but it seems like things are getting better, and you're doing great. I love all the videos and pictures. I can't wait to see some footage from your birthday!
Love,
Megan R.
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