A Lucy Update

Our happy little almost 17 month old has quite an appetite now!

Miss Lucy makinig elephant sounds in the bathtub! This was prior to eliminating all bath toys... I'll explain below...

Our growing little girls is growing lots of hair! I hear it from people almost every day that she looks so much older! I think it's her height & hair that make her look like a big kid!

Cheese! Surprise, surprise... after 17 months, she's learned how to pose for the camera! ;-)

So, here's the latest with Lucia Grace...

We had an appointment last week at the CF clinic & she had a great exam. Lungs sounding great, height & weight both stellar, digesting well, continuing on 2 enzymes with meals & 1-2 with snacks... I went in with a few key questions to discuss with Dr. Larson & we had a lengthy discussion about everything under the sun. It is great going there because although the appointments take half the day, you leave feeling well informed. We left the clinic with a bit of a change in our routine; we're back on a prophylactic nebulizer treatment every morning of hypertonic saline (7%), she was on it at 6 months but didn't tolerate it well, luckily now she's doing great with it. They did her quarterly throat culture & we were devestated to find out this week that it came back positive for a small amount of pseudomonas... This is one of the bacteria that we have been trying to prevent her from catching, but no such luck. We are however, optimistic that with early, aggressive treatment, we can kick it into "remission" aka get rid of it for good. They are starting her on 2 weeks of oral Cipro and 28 days of inhaled Tobramycin (TOBI). I had no idea TOBI was as expensive as it is... it's a relatively new inhaled antibiotic and it will cost $4,700 for one month's worth of treatments... thankfully we have 80% coverage until we meet our out of pocket max of $2,000 and then it'll be covered in full. But, the $860 copay isn't exactly a fun bill... Bum deal. However, always the optimist, we are so thankful this treatment exists and that hopefully this was all caught early enough that treatment will be very effective. We have eliminated all bath toys, continued to sanitize the bathtub before every bath, and are in the process of figuring out how to best keep Lucy protected yet still enjoy everything there is to enjoy in life. The fact is, you could catch pseudomonas nearly anywhere -- a blade of wet grass, a straw, a hottub (lifelong "no-no" for Lucy)... the list goes on & on. We'll take this in stride, learn from it & hopefully come away from this with better tools for keeping her healthy in the coming years. I have spent about 4 hours on the phone with the CF clinic, CF pharmacy, CF patient assistance program, insurance company & other non profit copay assistance programs looking into what options are out there that we can tap into, but unsurprisingly we fall into that inbetween category where we aren't wealthy enough for huge bills to go through our bank accounts unnoticed, but we make too much to qualify for the programs that would pay for this med. It's yet another example of how our country's healthcare and overall economy is so out of wack. It's sad to realize that if we made a bit less, we'd more easily receive the best care at a cheaper price. Well, enough rambling on for one day! Not to worry, even with all of this going on, Miss Lucy is doing fantastic, she doesn't seem sick in the slightest, she's happy, energetic & has a big appetite. Thank you all for your love & support in every way.