CF Factoid #15

Want to learn more about cystic fibrosis?  Check out the Cystic Fibrosis Foundation website!  You'll find lots of information about treatments, therapies, nutrition, testing, clinical trials, and much more!

She Speaks!

Judith's finally saying a word consistently!  It's pretty darn exciting!  In the past, she's said mama, dada, baby, boon (for balloon), boo (Buster's nickname), and piggy.  In the last week and a half, however, she's been saying baby more regularly, and even uses it in context!  It felt like it's been taking forever for her to get to this point, since she's been stringing sounds together for months, but I think we're starting with our first small word explosion!

It's still not a consistent thing, but she did say Boo in context a few times in the past week, and today she felt it was necessary to (loudly) say Dada a couple times during a quieter part of the service in church.  With any luck, those words will become just as consistent as the rest!  She's also recognizing more commands, and signing "more" and "all done."  She's consistently waving goodbye with a little encouragement - she practiced for almost a half hour after church today, waving at everyone who talked to her because she was ready to go home!

CF Factoid #14

Curious and interested in some of the new drugs that are being developed and studied for CF patients?  Check out the Drug Development Pipeline for updates on the phases that each drug is in!

CF Factoid #13

More than 10 million Americans are carriers of 1 mutation of the CF gene.  About 1 in 29 Caucasians, 1 in 46 Hispanics Americans, 1 in 65 African Americans, and 1 in 90 Asian Americans carry a CF mutation.

It's Beginning to Feel A Lot Like... Summer

Compared to how it feels in other parts of the country, I probably shouldn't complain too much.  But I'm going to anyway.  It's really humid, and it's not going away any time soon.  I was really hoping that the warm but not humid conditions would continue, and we could delay putting the air conditioners in the windows.  That's not going to happen - it's only supposed to get hotter as the weekend approaches, and for Judith's sake and the dogs' sake, the units will be put in tomorrow night and probably operating as well.  Humidity and I don't get along, so it'll feel nice to have a climate controlled house and good sleeping conditions again.

Today has been the worst day so far with the humidity, and I know it's affecting Judith.  After a call to the CF clinic, I received instructions on how to make sure she has enough salt and fluids in her system - she's still getting the additional 1/4 tsp. every day, but we're sweating so much right now that I'm worried even that amount won't help her body catch up to what she's losing.  I have some Gatorade in the house, and we're going to add an extra 1/8 tsp. to the entire bottle (it's not the smallest size, but one of the medium sizes - I'm guessing 32oz?) and trying that with her in addition to the Pediasure.

Since we rescheduled her speech therapy to this morning so she could go visit John at work yesterday afternoon, I decided we would try some Gatorade to get some extra salt into her.  I have 3 flavors: fruit punch, lemonade, and lemon-lime.  I thought, "Well, it's humid and fairly warm, so lemonade would be refreshing."  I opened it, added the salt, and filled a sippy cup for her to try.

She took 1 sip and made the strangest face!  It was rather amusing.  I didn't realize it would be quite that sour, but also thought she would just have to adjust to the flavor since she's used to only drinking Pediasure right now.  She tried it a couple more times with the same results, so I guess she's not a fan of it at this point.  We'll keep trying though, and I'll open one of the other bottles if necessary.

CF Factoid #12

Over 1800 different CF mutations have been discovered so far.

CF Factoid #11

There is no cure for CF; however, new drugs such as Kalydeco are the closest things to a cure that the CF community has seen to date.