I had to move to a shared room a few days ago. They needed to isolate someone so I had to move. I am doing pretty well. I am up to 80 cc's every three hours just 10 cc's shy of 3 oz. I started enzymes yesterday. I get one full caspsule before every feed. Hopes are the enzymes will help me gain weight. I had a busy day yesterday and I had my circumsicion and a sweat test. I should get my results from the sweat test today. I also got my genetic test back and they found the second mutation. We already knew I had the DF508 and the other mutation is IVS7+1G>A. This is a rare mutation. I could possibly be the only person in the world with this mutation. It is unknown if I will have a milder case of CF or more severe. We are pretty sure I am pancreatic insufficient since I was born with the meconium ileus. Just to check they are doing a fecal elastase study on my poop. Being pancreatic insufficient means my pancreas doesn't produce as many of the enzymes I need to digest my food. I need an extra boost with the enzyme capsules.
Love, Ben
14 comments:
Hey Peanut Butter! I'm glad things are going better, I talked with your mommy last night for a few minutes, I miss her, and of course you and your daddy! I will deff. be there next friday to see you and hopefully it will be at your nice home! I will try and come before that too! Keep up the good work and I love you so much! As Emma would say your the "bestestes"! Love, Auntie Annie!
Hey Ben,
Keep up the good work. I hope to see you sometime next week. Hugs to you, your Mommy and Daddy!
Love,
Jen Sweets
It has been awhile since we checked your blog. We have been in Iowa for the past month. So sorry that you are still in the hospital. Hopefully your move to U of M has been a good one. We pray for you and your family daily. Please let us know if we can do anything. Maybe when you come home Trinity and you can have a playdate and actually meet face to face!! Tell your mommy to call if she ever needs to talk.
Love,
Shannon, Miranda, Aubree, and Trinity Arthur
Good Morning Beautiful Benjamin,
We enjoyed visiting with you and mommy and daddy yesterday, and miss you already - you are so very sweet! Keep on keeping your food down and start gaining weight and you can go home soon. We love you and mommy and daddy bunches and bunches. God Bless You All, Grandma Carol & Papa Phil XOXOXOXO
Hey More Handsome Than Ever!
We check up on you almost every day to see how you are getting along; hoping for the day you can come home for good. We look forward to the day we meet you some day and see those big blue eyes for real and in person. As always we send butterfly kisses to you and big fat hugs to your Mommy and Daddy!
Love The Rapsons
Hi Ben,
We liked seeing your new pictures. Keep getting strong so you can come home soon. Take care.
Love,
Norino, Leanne, Marissa and Lexi
Hey Ben,
Wow that's pretty amazing if you are the only person in the world with that gene! You might be in the medical textbooks someday! I'm glad you are eating and keeping it down! Keep getting stronger and hopefully you'll go home soon! My sister and I still pray for you before our bedtime...which lately I've been pushing later and later! Who wants to go to bed when it's still light outside? My mom doesn't think it's too funny!
Take care and keep fighting the good fight!!
Your friend, Cameron
Hey Ben, it's Aunt Carin,
I have no idea what the heck you said with all those big words, but it sounds like you're still progressing forward, and that's great news! I really hope that the doctors let you go home this weekend, but I guess patience is necessary, right?
Doc said my results are inconclusive and I will go for another test on Tuesday, so until then I still have to keep away, which is killing me.
Keep getting bigger and better and stronger and cuter (if that's possible)!
Much love, hugs, & kisses, xoxoxo
Hey Big Ben!
I check this site a couple of times a day and it brings a smile to my face to see such positive progress. I miss you tons. I wish I could be there buddy to see you grow each day. Tell your mom I will try and get a hold of her tomorrow and that I miss all three of very much. Stay strong pal!
Love
Uncle Adam
Happy Father's Day Chris, we love all of you.
Uncle Mike & Aunt Kathy
Hey Ben, it's Aunt Carin :-)
How are things going with the enzymes and increased food? Are you gaining? How did your poop study work out? Did it pass? Hee hee! I hope you're doing great and that dad had a nice first father's day! Give mom & dad a hug from me (or a kick, you know the drill).
xoxo
Hey peanut! We were happy to see you the other day - if even for a minute :) You look great in the cargo pants - I think baseball jerseys are definitely your style. It sounds like your docs just have to find the right magic spell to put in your bottle for you to start gaining some L-B's. You have been a trooper this far, just keep it up buddy and we will see you when you get home.
PS- there is still plenty of summer left for us to go for walks with you and your mommmy. A little fresh air does everyone some good!
Lots of love -
JKJ
hey ben! i knew you were super special and unique! having a gene that no one else has-do you know how impotent that is in trying to find a cure?! the drs and researchers can't cure things that haven't even been discovered yet-so you're very important to the process. keep on keeping on! hope that you get to come home really soon.
lots of love - meghan
tee hee hee -- i wrote impotent instead of important - i totally meant important. you are VERY VERY IMPORTANT!!!!
where's spell check when you need it.
hah!
love meghan
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