Sunday, September 20, 2009

CF and life update!

After "meeting" a new CF mom through my online support group (and adding her as a friend on facebook, duh!) I realized I haven't really mentioned CF on here lately!

Currently Gavin is still doing his two breathing treatments a day which include an albuterol nebulizer treatment and CPT's. This eats up about an hour of our day, but in the evenings we wait until he is really sleeping to do them. 99% of the time he sleeps through all of them, so instead of looking it as treatments, I look at it as a half hour a day I get to spend staring at my sleeping baby :)

He takes 2 Creon 5 with small meals (rice cereal/oatmeal with fruit) and 4 Creon 5 with bottles and meals. For big meals, he eats two jars of chicken/turkey, a jar...or two...of veggies and a jar...or two...of fruit along with some water out of his sippy cup. He takes about 3-4 six ounce bottles a day. He is eating just about every 3 hours. I gave him a teething biscuit for the first time today, and he thought that was just the greatest thing ever! Of course he got it all over his face, but what food does he eat that doesn't get everywhere?!?

Tomorrow I am bringing him in for his second round of his flu shot, yuck, so I'll get to find out how tall he is and how much he weighs. Our next CF clinic visit will be toward the end of October, I really need to remember to make that appointment. Pretty soon we'll only have to go to the CF clinic every three months, unless he gets sick of course, woohoo!! I am excited to ask our pulm. about the conference she attended on the VX drugs which will affect our family in major ways! I cannot wait to see if they have some idea on a timeline of when it will reach phase four!

And just so we're all on the same page...our little boy will plan for retirement, grandkids and old age someday!


  1. Sounds like a great plan to me!!!! Definitely update us on the VX drug if you can, I would love to hear an update!!

  2. totally with you on planning on retirement with him. Can't wait to hear about the drug.

  3. Let me know what your DR says about the VX drug. Can't wait to hear about it!