Friday, November 9, 2012


Wow...Obviously I am no good at keeping track of things. I started this blog back in January and have done nothing with it since. So to get back on track I am making myself post daily....well weekly...well hell if I can keep up and post a couple times a month that would be amazing...

Rambling on and goes...

Since January there have been MAJOR changes. We moved to Florida back in September. It is nice being where it's warm and the salt air is great for Zach.

CF has been ruling our life as of late. Zach has had an infection that has been a pain in the rear to get rid of. And to top it off we had to fight with insurance to get the antibiotic he needed...well i guess when your talking about a $3500 14 day supply of an antibiotic you are going to get a fight. Thank God Pfizer helped us out and covered the co-pay that we could not afford at this time. I can't imagine our insurance, or anyone's insurance with a CFer, likes us very much. Zach's monthly meds, without being sick, run about $18,000(before insurance coverage). And that doesn't even include the cost of any supplies we need (neb kit's, new vest ect). Speaking of vests...Zach got his new vest, it is sweet. Camo colored, the front doesn't come up to his neck like his old one, it fits more like a vest (with the "v" neck line) and the hoses come in at the sides and instead of velcor it has clip straps (which makes it so much better). He told me this morning he LOVES his new vest (he even did it without anyone telling him to!) SWEET CHEST THERAPY COMPLIANCE!!!! We LOVE compliancy!

OH an our new CF clinic @Nemours Childrens Hospital here in Jacksonville, its great. At our first visit they gave me a binder (oh how I love binder's and organization!), to keep all his records in and with lots of info on diet (high calorie food idea's) and site links for help with things, and med lists and just lots of stuff. I love that at every visit they will give me a copy of his PFT's (for those who don't know, this is basically the measure of how well your lungs are working and we keep very close track of what they measure) So now I can see and keep track an know when something isn't write.

ok ok I have rambled enough about CF now the fun part...the OCEAN! The kids have taken to the ocean like fish. They LOVE it! If they had their way they would spend everyday at the beach. They love finding shells (and have even found a starfish and 2 good size conch shells (which are hard to find)). Zach loves getting out there on the skim board and riding in the surf, and he's pretty good at it. Ki'a, is her father's daughter, she wants to be on the surf board!

1 comment:

  1. I'm so glad that the kids and you are happy here. It's so good having the whole family back together. The kids seem to have been made for beach life. I'm so grateful that Nemours is working out well so far. ♥