Thursday, May 23, 2013

CF Clinic Visit

Hi people!  Charlie just had a visit with the CF Center this week and I thought I would share a little update.  I'm so bummed since I haven't been able to go to any appointments for at least 4 months now, being so new at my job and just having taken a vacation.  The next one though, I AM THERE haha.

The CF Clinic is at the Htfd Childrens Medical Center and they get toy donations which they then give to their patients during long visits.  This has been awesome- these visits can go anywhere from 2-3 hours so when melt downs ensue it is really nice to have a new toy to distract Charlie.  Robb said this visit was 3 hours long so he walked away with a car and two monster trucks :) So nice of them to help us out like that and so generous for people to donate toys to Children's Hospitals.
Anyways, they think Charlie is doing well.  They took another throat culture to ensure that his psuedomonas is still gone (please please please!  I'll know in another week or so), and did all the normal fun check up stuff.  He lost a pound in the last 2 months, which isn't good but they think it was probably due to the fever he had.  Because of this and the fact that Charlie is super tall his weight/height BMI is only 15% (the minimum they want to see is 50%), but we're hoping we can add in an extra junk food snack everyday and get his weight back up there.

I also asked Robb to bring up adding in a new medication called Pulmozyme, which I think could be a great complement to his current regimen considering he's had some lung infections in the past.  Honestly, I really don't want to have to do yet another medication but I think this one would be worth it and a good preventative measure.

Here are Charlie's stats:

Charlie's Current Cystic Fibrosis Medications and Treatments

Gene Types: Delta F508 (∆F508) homozygous
Diagnosis via PK Screen: September 9, 2010 (2 weeks old), confirmed via sweat test September 13, 2010.
Age: 2 years and 9 Months
Weight: 33.4lbs (50-75th percentile)
Height: 40 inches (97th percentile, this kid is tall!)
Weight to Length Ratio: 15th percentile (boooo)


Albuterol (to help open his lung pathways): 3-5 puffs 2x per day
Pulmicort: adminstered via nebulizer 2x per day during vest therapy
ADEK Vitamins (to help him absorb the vitamins he cannot absorb from food): 2mL, 1X a day
Pepcid (to help him with acid reflux and malabsorption): 2mL, 2X per day
Creon 12000 Enzymes (to break down his food so he can absorb it): 3 capsules per meal
Periactin (appetite stimulant): 6mL, 1X per day
Vit-D-Sol (for a slight vitamin D deficiency shown in his bloodwork): 2.5mL 1X per day
TOBI (antibiotic for pseudomonas infection): 4 capsules, 2 times per day, every other month
Zithromycin (another antibiotic): 4mL per day- M,W,F Only
Salt (to make up for the salt he loses each day): 1/4th teaspoon per day
Chest Physical Therapy (to break up the mucus): 2 times a day via Hill-Rom "The Vest"

If you're wondering if administering all those medications is exhausting, you are correct!  Luckily our nanny does his breathing treatments Tuesday- Friday for us and then Saturday-Monday Robb and I try to split them up.  I'll tell you though, some nights when I'm tired from working and excercising I get SO SICK of having to put applesauce in a little ramekin and then sprinkle pills all over it.  I just want to be able to feed him without having to worry about enzymes first!  I inevitably take three thousand trips to the refrigerator because I'll get his food and then realize I forgot his milk and then I'll get his milk and then realize I forgot applesauce and then I'll get the applesauce and realize I don't have a clean ramekin and then I'll clean a ramekin and then realize the enzymes are in the other room.  It's just a pain, especially whenever we go somewhere having to bring applesauce, enzymes, a spoon and a little tupperware container for mixing  so he can eat.  It's not a HUGE deal but it just grinds on ya sometimes.  I can't wait until he's old enough to swallow those pills!  Woooweee that'll be a great day :D

I found another CF mom's blog who has a son, Bennett, who is about a year older than Charlie.  He has had a much harder childhood than Charlie- undergoing surgery as a newborn, having a G tube (gastric feeding tube, many CF kids have this to help with weight gain) and multiple hospital stays.  We're so lucky that Charlie is doing so well right now!  But anyways, she had a little blog post about raising a child with a chronic illness that I thought was very interesting. I thought I'd share it here since it definitely fits in with how I've been feeling lately.

(by Emily Perl Kingsley. (c)1987 All rights reserved

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

And a few last pictures of my handsome man from the last week :)

 At a safety festival thingy- they had fire trucks, helicopters, ambulances, all sorts of fun stuff and Charlie was so overwhelmed he wouldn't go on any of them! haha, he did love that hat though :)

 Success after a day of fire trucks and the beach!

I just think this photo is really funny.  Charlie was watching Curious George with such devoted attention, his eyes were huuuuuge because he was focusing so intently so I decided to snap a quick picture.  He didn't even notice haha.


  1. Simply spectacular assessment of a day in the life me, Holland is much better than Italy any day.xx

  2. Hey- I know Emily Kingston. She has a son with downs and lives in Chappaqua, near Gaga's. She was a writer for Sesame Street and bought the disability thing there. Peggy


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