Well it has been a while since I last wrote. I am no longer on TPN! I still get sodium chloride bags every night for hydration. We are slowly weaning down on the volume infused as long as my labs come back with good numbers. Mom draws my blood every Monday and now we also have to draw it every Thursday to check my ionized calcium levels and phosphorus. I have to start a new medication for my vitamin deficiency. It is called Rocaltrol. We have to make sure these levels stay within normal range to prevent bad side effects. I am starting to eat a lot more big people food. I love fish and bologna. I had spaghetti and pasta sauce the other day and liked that a lot too. I am going to take my first trip with my parents for Easter. We are driving down to Atlanta to see my uncle Norm. Thankfully my Dad has a van so we can haul all my stuff...including my IV pole and medication cooler! Who knew a boy my size would need to pack so much stuff.
Go STATE!Ben
10 comments:
I love the new pictures. We had so much fun at Benjamin's birthday party. Good food, drinks and company, you guys sure know how to entertain. It was nice to see Chris's family again, they are all so nice. Hope to see you soon. xoxo Great Aunt Jane
Good Morning Beautiful Boy,
We are looking forward seeing you tonight and watching the Spartans win. Also enjoyed your birthday celebration and visiting with your Grandma Beth's family. We always enjoy their company. Looking forward to seeing everyone at the walk on Thursday, May 7th. God Bless and love you all bunches. XOXOXO Grandma Carol & Papa Phil
Hey Buddy,
That spaghetti sure does look good, lol. Did you look outside this morning, what is all that white stuff again, we want to see flowers this time of year! Hope to see you soon, love and miss you, Go Green!
Love,
Aunt Tera
Hi Benjamin,
Have a great trip to your Great Uncle Norman's . . . we'll be looking for your Easter pictures! God Bless all of your family.
Love, Uncle Mike & Aunt Kathy
Ben: We made our donation to the walk so quickly that we forgot to leave a message. We just want you to know that you are in our hearts and prayers.
hey ben...mmmm spaghetti! looks like you enjoyed it too! a road trip sounds exhausting but fun...hope you and your mom and dad have a great time. happy easter!!
lots of love - meghan
Ben
You look great! Keep it up little man! We think of you often. Tell your folks hello and give them hugs from us.
Love The Bentley's
Ben,
It was AWESOME to see you in Atlanta and we had a fun time at the zoo with you. Keep up the great work. I am so glad that Logan and Delaney finally got to meet you.
Love you,
The Sweets family
Oh my gosh ... your Mom is a great asset to the entire CF organization! Let's hope her comments on the Chapter Chat will inspire others to commit to the cause. You are really blessed to have such wonderful parents!
Love to the whole family,
Aunt Kathy
Happy Easter Ben, Mom & Dad
So happy you're off TPN. Keep up the good work. Hope you have a great road trip; can't wait to hear how things went.
Hugs to all - Judy, Carl & Sean
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