Thursday, March 21, 2013

Charlie Update :)


Hiya friends!  First off I want to remind you about my mega huge giveaway for my 3 year blog-a-versary!  Go here to check it out and enter to win!

Second, I wanted to give you guys a Charlie update!  I am thrilled to say that Charlie is now Pseudomonas NEGATIVE! Yeah, that's right! NEGATIVE! SUCH great news! Charlie started culturing the really nasty Pseudomonas bacteria back in October and it just would not go away no matter how many antibiotics we threw at it. But now, finally, 5 months later and it's gone! He will still have to be on monthly cycles of TOBI and Zithromycin (antibiotics), and he will have to culture negative for one whole year before he's considered "psuedomonas free", but this is a GREAT start!  We are so happy that the extra hour of treatments have finally started making a difference.  Yippee! 

SN: When Charlie was around 6 months old we were asked to participate in a video that would be given to newly diagnosed parents of CF babies.  They needed a 'baby model' for the video to show how to do chest PT, give enzymes, blah blah.  We of course said YES because something like that would have been so helpful when we first found out!  Anyways, we got a copy of the DVD years ago but I just realized that it's on the CFF website now!  If you wanna see Charlie at 6 months old you can check it out HERE.  Go to the Enzymes/Nutrition and Airway Clearance videos to see his cute little mug.  Man he was little! 

Here's a quick breakdown of Charlie life at 2.5years old :)
0600-0700: Climb into bed with daddy while mommy gets ready for work

0715:

  • 7mL Prilosec
  • 3 enzymes
  • Breakfast (Pediasure 1.5, cheese stick, yogurt)
0800-0900: Treatment #1

  • 3 puffs of Albuterol,
  • 1 vial of Pulmicort in the nebulizer
  • Physiotherapy Vest (20min)
  • 1 vial of TOBI for psuedomonas (30 min, this is one month on, one month off. I hate the 'on' months because it takes sooooo long and charlie loses his patience after the first 30min of his treatment)
0900-1200: Rock and Roll Party Time. If he's with me we usually do errands, if he's with his nanny she'll usually bring him somewhere fun, if he's with Robb they usually play cars (I think mommy time sounds the least fun come to think of it lol)

12-1230: Roll the dice and try and find a lunch he'll eat and get it cooking

1230-1300: 3 Enzymes + Lunch

1300-1330: Read books, Go down for a "nap". Sometimes he'll nap for Robb and I but it's rare lately. Somehow he always naps for our nanny though! Not fair lol

1430-1500: Wake up from "nap"

1500-1630: Arts and Crafts, playing outside, blocks, etc

1630-1730: Treatment #2 (same as #1)

1700-1730: Bath time

1730-1800: Mom and Dad get home, get started on dinner (I make one dinner for Charlie and a separate 'healthy adult' meal for Robb and I)

1830-1900: 3 Enzymes + eat dinner (hot dogs, tater tots, chips, whole milk, nuggets, or mac and cheese)

1900: Med time! This is the fun part lol. He's started realizing he doesn't care for his meds so whenever he sees me coming with a syringe full of medecine he immediately starts shoving food into his mouth so I can't give it to him. It works out actually because I can get him to eat more that way lol!

  • 2mL AquaADEK Vitamins
  • 2.5mL Vit-D-Sol
  • 6mL Periactin
  • 7mL Prilosec
  • 4mL Zithromax (M,W,F Only)
1915-1945: Story time and then Bed

1945: Celebrate! :P

SO there you have it, such an exciting life he leads lol. Be back soon with more stuff to blather on about :)

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