Big, Exciting News!

First of all, as everyone is now aware, the Supreme Court upheld the Health Reform Act, and I am very pleased with this decision!

But there is something else, something bigger, that has excited me and given me hope:

The final phase 2 study results of the study of VX-809/Kalydeco combination has been released, and it shows significant improvements in lung function!


The biggest improvements were seen in patients with 2 copies of the DF508 mutation, but patients with 1 copy also saw improvements, even though they were smaller improvements.

Pivotal studies will be started for those with 2 copies of DF508, and additional studies are going to be done with the VX-809/Kalydeco combo in those with 1 copy of DF508.  You can read more about the upcoming studies and the phase 2 results here.

It's really happening - we're taking that huge step closer to a cure!  The future doesn't look quite as gloomy.

Picky, Picky, Picky

I am about ready to bang my head off the wall in frustration.  Judith cannot afford to be in a picky phase.  I know this is normal for toddlers, but when you're trying to pump almost 2,000 calories a day into her and she refuses 95% of what you place in front of her, the frustration is bound to happen.

For example: today's lunch menu consisted of "souper orzo" (it's basically orzo made with a can of tomato soup, some milk, and some butter), and a country blend of veggies with butter.  Both were rejected in favor of potato chips and an ice cube to help soothe her gums from teething (we have another tooth, by the way, and there are 3 more on the way).  5-6oz of Pediasure was also consumed.

At least the chips are high in calories.

A typical mealtime conversation right now is as follows:

Judith: (looks at food presented, pokes it with finger, samples, fusses for sippy cup, consumes at least half of contents of said cup)


Me: Why don't you eat some of your (insert food here)?

Judith: (moves rejected food item from one side of the tray to the other) Aaaaaaaaaaah! (smears contents of tray around the tray with 1/3 of the contents flying in all directions)


Me: You need to eat.

Judith: Ahh dah (all done)!

Me: No, you're not all done.  Eat.

Judith: Ahh dah!

Me: Eat more.  More!  (signs more)


Judith: Ahh dah!

Lather, rinse, repeat.

I can't wait to see what she weighs when we go to our next clinic appointment.  At this rate, her weight gain will be minimal or worse, negative.  I can't help but worry about it.

On the flip side, I'm glad we don't have to take Buster & Lady to the vet for their well doggy visits until next year.  Judith may be turning her nose up at everything I present her with, but the dogs are putting their noses to the ground and having a heyday with the leftovers and rejected scraps.  Lady looks like she gained a pound or 2, and Buster still has his round shape.  They don't feel heavier, and they're a long way away from being obese, but I'd hate to see what the scale would say if one of them was on it.

Adventures in Toddlerhood

It's amazing to see all of the new things Judith is starting to do, and I'm watching her grow up so fast right before my eyes.  It's hard to believe that last year at this time we were working on getting her to sit unsupported, and now we're chasing her all over the place.  And let me tell you, this kid is fast!

Judith's still working on those molars, and based on how crabby she's been (and how many things she's been chewing on), there are more that are working their way up to the surface. She doesn't mind having her teeth brushed as long as we do it quickly.  I need to build up some courage to get my fingers in there to feel around her gums again since the little stinker often moves her tongue over her teeth and won't let me see them.

Judith loves to imitate us, the dogs, her grandparents, practically anyone she's comfortable with!  Baby sign language is not going well - the most we can get out of her is a sign for "more", otherwise she looks at us like we're nuts and refuses to mimic the sign.  Her speech therapist isn't concerned though, especially since Judith's starting to have a language and sound explosion!  This weekend we added duck, doggie, and boogie to our list.  Most things are either "Dee" (for Lady) or "baby," but I'm hoping she'll start repeating the proper names soon.

We experienced another first today.  Now that she's almost 19 months old, Judith thought it would be appropriate to initiate us into the world of toddler tantrums - as in, full-out, screaming, stomping, throw yourself down tantrums.  She got mad when she had to give up one of her rings before speech therapy.  She got mad during speech therapy when we wouldn't allow her to chew on every single toy.  She got mad at the grocery store because we wanted to wipe down different parts of her new snail balloon (mostly the clip anchor part, because we knew it would go straight into the mouth), and to accomplish that we had to move her hands.  She got mad when we had to take the balloon from her temporarily to put her in her car seat.  And she got mad over the meal menus for the day.  Her speech therapist and I are thinking she's starting to get frustrated by not being able to communicate things, but at the same time we're hoping she'll start picking up some more words so she can communicate better.

Life is definitely interesting right now!

It's Like A Furnace Outside

This is seriously the worst part of Pennsylvania summers.  Granted it's nothing compared to what many people deal with in the southern states, but when it gets this hot and humid here, it's bad.  Humidity and I don't get along, period.  Apparently Judith is not a fan either.

Because the air quality is crappy as a result of the very high temps and the humidity, we have to stay inside in the a/c.  You know when they issue the alerts and say it's "unhealthy for the sensitive?"  Well, Judith qualifies as one of the sensitive because of the CF, and her docs want her safely ensconced in an air conditioned abode.  Last year, the temperatures were much higher for much longer, but it wasn't as bad staying in because Judith wasn't nearly as mobile as she is now.  This is only supposed to last 2-3 days, but it might be enough to drive me crazy!

I've also been implementing our hot weather backup plan that I got from our nutritionist, and have been offering gatorade with some extra salt added in so we're sure Judith's replacing what she's losing.  I keep hoping that Judith will take a liking to the gatorade, but so far no luck.  Maybe that will change as she gets used to it (cross your fingers!).

A friend of mine who is a fellow preemie mama described it best: thanks to this heat and humidity, it's like we're stuck under lockdown all over again.  Blah.

We're Up and Running Again!

I may have to make a few tweaks to some things on my new banner and layout, but everything else is basically set!

Also, you'll notice I changed our Top Mommy Blogs button.  While you're looking at it, please take a few seconds and click on it to vote for us.  Remember you can vote every day - help us rise in the ranks to help bring awareness to prematurity and cystic fibrosis!

Pardon Our Mess!

I've been dabbling in Photoshop Elements and working on creating my own blog background, so please bear with me as I work on getting things sized and set up properly!  Things look like a construction zone, but hopefully by the end of the weekend everything will be back to normal and my snazzy new background will look awesome!

2012 Great Strides Team Total

I admit it: I dropped the ball on this one.  It's been about 3 weeks since our Great Strides walk, and I completely forgot to check our team page to see if we met our goal.  I started thinking ahead to next year's walk, and brainstorming some different fundraising ideas, and it prompted me to check our total.

I am happy to say that we met and passed our extremely modest team goal of $1,500.  Journey for Judith raised $2,155.00!  Not bad for our first year!