Tuesday, May 29, 2012

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!

Sunday, May 27, 2012

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!

Friday, May 25, 2012

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.

Wednesday, May 23, 2012

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.

Monday, May 21, 2012

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.

Saturday, May 19, 2012

Great Strides Walk 2012

This morning was our Great Strides walk, and it was a gorgeous day!  There were over 600 walkers this year, and the most accurate total they had for the funds raised was over $100,000!

Our team was small, and next year I'm hoping we can have more people join us!  This year, though, our team included me, John, Judith, my friend Amy and her 3 children, and 2 of my grandparents.  I was pretty impressed that my grandfather walked the entire 5k loop - he has a bad knee and normally doesn't walk long distances like that, but he completed the whole thing!

There were 2 photographers on hand that took team pictures and documented the day's events - I will post the team picture as soon as I receive it in my inbox!  I have some of my own pics from the day:

Taking it all in!

Puppy balloon from the balloon guy

Judith got to meet an 18 year old African tortoise.  She wasn't too wild about it... or the grass.

John relaxing in the shade before the walk

Exploring the shrubbery

Team Journey for Judith getting ready to walk!

5k takes a lot out of you, yo.


CF Factoid #10

There are a lot of medications available to CF patients to help keep their lungs healthy, including inhaled antibiotics, dornase alfa, azithromycin, hypertonic saline, and high-dose ibuprofen.

(source: cff.org)

Thursday, May 17, 2012

CF Factoid #9

Nutritional needs for CF patients vary by age.  For a toddler like Judith, approximately 1300-1900 calories a day need to be consumed to help them maintain or reach a healthy weight.

Wednesday, May 16, 2012

Wordless Wednesday

Ok, so not completely wordless.  A bunch of my friends who blog often do this feature with their little ones, and I want to try to make this a semi-regular feature.  Hey, it's a chance for me to show off miss Judith, and what proud mama wouldn't want to show off their child?


Tuesday, May 15, 2012

CF Factoid #8

CF patients have daily airway clearance therapy to help move the thick, sticky mucous out of their lungs.  This can be done manually, either by cupping the hands or with the aid of a percussor cup, or a machine such as The Vest can be used.

Monday, May 14, 2012

Woo Hoo!

We got rid of the pseudomonas with 1 round of TOBI!  Hooray!

Sunday, May 13, 2012

CF Factoid #7

People with CF should practice the 4 foot rule to minimize the likelihood of transmitting various bacteria and other germs to each other.

Friday, May 11, 2012

CF Factoid #6

Sweat chloride tests are used to help determine whether or not a person has CF.  A special solution is spread on the arms, and small electrodes are placed on the arms to help create heat and generate sweat.  The sweat is collected, and the amount of salt is measured.  The guidelines are slightly different for babies 6 months and younger vs. those used for older babies, children, and adults.

For babies 6 months and younger:
- any number at or above 60 mmol/L means the person has CF
- any number between 30 and 59 mmol/L is borderline and further testing/examination should be done on a case-by-case basis
- any number below 30 means the person does not have CF

For anyone over the age of 6 months:
- anything 60 or above means the person has CF
- anything between 40 and 59 is borderline
- anything below 40 is negative

Wednesday, May 9, 2012

CF Factoid #5

CF doesn't only affect the respiratory system.  It also affects the digestive system - the abnormally thick mucus a CF patient's body produces clogs the pancreas and disrupts the flow of natural enzymes which help break down and absorb food.  Artificial enzymes help replace those that the body fails to make.

Tuesday, May 8, 2012

Reculture and Miscellaneous Musings

Our days have been fairly busy lately, especially now that Judith is walking all over the place and getting into everything she possibly can.  She seriously wears me out big time - at least I'm getting a decent amount of exercise chasing after her!

Thursday and Friday of last week we enjoyed some warmer weather.  Friday's temperatures were high enough that I was able to break out one of the adorable smocked sun suits I purchased for Judith a couple months ago!  I decided to go with the Preppy Alligator pattern from Shrimp & Grits Kids:

 Removing all of her animals from the chair

Check out that ruffle butt!

Adorable detailing, and a bonus side-eye (she's getting rather good at that...)

On Saturday I packed Judith and the dogs into the car and drove to my parents' for a little visit!  The dogs were excited to go to their house again, but were apprehensive at first - they weren't sure about what was going on with my dad, and they finally warmed up and realized things are ok after an hour or 2.  I went with my mom to the salon to get haircuts, and Judith had a great time trying to de-shelve the brightly colored bottles of products and playing in the hair that was cut off of my mom's head and my head.

Sunday afternoon we caught a break.  John played in our local AGO chapter's member's recital, and got a ton of compliments on one of his arrangements!  Thanks to these people complimenting him, he got an extra dose of motivation to start contacting publishers to get some of his stuff out there (I've been encouraging him to do this for years, but I guess this was the push he needed to really take it seriously).  Since Judith decided naps are for quitters (that made for an interesting worship service), I stayed home with her so she could sleep and I could relax.

We'll skip over Monday since it was a boring day with minimal action.  Fast forward to today: I took Judith to Hershey for her reculture of her throat/sputum.  While we still have 3 more doses of TOBI to give her, I'm keeping my fingers crossed that the meds worked and the pseudomonas are gone.  We probably won't get the results until Monday.

I was alone with her for this appointment, and thankfully she didn't have an epic meltdown - she was by no means happy about having her throat swabbed, and melted down a little bit, but it didn't last as long as normal.  She even reached out to the nurse for her to hold her!  Of course after the nurse swabbed her, Judith gave her best "boo boo" face and cried, but when I reminded her that she wouldn't see Dr. Graff at this appointment she calmed down.

Speech therapy went well today!  Judith babbled more for her therapist, and we got a charge out of her carrying around a canister lid and laughing hysterically at Lady, who was closely trailing her - Lady naturally saw a disc shaped object and assumed it was a frisbee for her, and wanted to play with it but Judith wasn't giving it up!  I knew she was getting tired on top of it, because she was extra silly, but I was also impressed at how focused she was when playing with Lady!  Naturally Lady had a blast chasing after Judith, even though she didn't understand why Judith wouldn't just throw the lid for her.


Monday, May 7, 2012

CF Factoid #4

The current life expectancy for CF patients averages in the mid to late 30s.  It is the hope of professionals, patients, and families that the new, life-saving drugs such as Kalydeco and VX-809 will have the potential to double that expectancy.

Saturday, May 5, 2012

CF Factoid #3

About 30,000 people in the US and about 70,000 people worldwide have cystic fibrosis.

Thursday, May 3, 2012

CF Factoid #2

There is a free, easy way for you to help people with CF: become an advocate!  Visit the Cystic Fibrosis Foundation's advocacy page to learn more (and to sign up!).

Tuesday, May 1, 2012

May is Cystic Fibrosis Awareness Month

For the last year, I've been posting different facts about CF, and you've had the opportunity to read about Judith's fight with this disease.  Over the course of the next 31 days, I'm going to repeat some of those facts, share how you can become an advocate, and continue to share Judith's story.

Cystic Fibrosis Factoid #1:
Did you know that about 90% of people with CF carry at least 1 copy of the DF508 mutation?

We know that Judith has 1 copy of this mutation.  Her 2nd mutation is still unknown.