Thursday, June 28, 2012

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.

Wednesday, June 27, 2012

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.

Monday, June 25, 2012

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!

Wednesday, June 20, 2012

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.

Saturday, June 16, 2012

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!

Thursday, June 14, 2012

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!

Monday, June 11, 2012

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!

Sunday, June 10, 2012

Weekend Fun

It's always nice when we get to spend time with family!  My parents are great, and they usually see Judith at least once a week.  My in-laws don't get to see her as often, and it makes me feel bad - thanks to work schedules and the distance (granted it's not nearly as far as some grandparents deal with) arranging times to get together can be tricky.  However, this weekend Judith got the best of both worlds and was able to spend time with all of her grandparents and almost all of her great-grandparents!

On Saturday my in-laws made the trek to our house and spent some time with us in the afternoon (and they brought some very tasty Cracker Barrel meals with them - yum yum!).  Judith loved playing outside with Grandpa, and was having a blast showing both Grandma and Grandpa some of her new "tricks" (talking, silly faces, etc.).

Today, Judith got to go to church with her other grandparents (this was the first Sunday my dad was able to go back to church after his surgeries!), and she had fun being her silly self.  We spent a good chunk of the afternoon with them, and her great-grandparents stopped by for a visit with her.  They bought her a new toy!  She got her "first car" - it's one of those cars where you sit in it, but it has a long handle for the adult to push, sort of like a stroller.  Judith absolutely loved riding around in it!  I have pictures, and will try to remember to post once I upload them.

The one thing we didn't get to do today was go and visit Judith's other great-grandmother.  Judith was rebelling against naps and was having way too much fun doing everything else, so we decided to skip the visit and I took her home instead.  We're hoping that maybe we can squeeze in a visit in the very near future, since I know Great Nana's looking forward to it!

Wednesday, June 6, 2012

Wordless Wednesday

Outtake from our 18m photo shoot.


Tuesday, June 5, 2012

18 Month Stats

Judith's 18 month well baby visit was this morning.  Her pediatrician is impressed that Judith isn't on a lot of meds right now (and frankly I'm pretty damned amazed myself), and while she isn't unhappy with Judith's weight she's not totally happy either.

Judith's current stats are as follows:
Weight: 20 lbs, 12 oz (10%) - we're getting closer to finally being able to get The Vest!
Length: 30 1/4" (10%)
Head Circumference: 18" (25%)

I'm excited about her weight percentile - she's finally hit a percentile that's higher than the 3%!  Granted this can change by our next clinic visit, but for now I'll take it!  She's also finally on the chart for her length, and that's very exciting!  Her head circumference is still following it's curve, so no concerns there.

Judith actually did pretty well this visit, especially compared to past behavior.  She waved hello to Dr. W. when she came into the room, and only had 1.5 meltdowns: the first one was when the nurse measured her length (she didn't want to be stretched out), and the second one was when Dr. W. checked her hips.  Otherwise she spent most of the exam swatting the various equipment and Dr. W.'s hands away from her.

I discovered a small surprise when Dr. W. was checking Judith's teeth: the 2 bottom molars started cutting through, and apparently the top right molar also decided to make an appearance.  That means she's cutting all 4 at once - no wonder she's been so miserable!  They're only partially in, so we still have a way to go before she's fully done, but I'm hoping that this start will make her a little less miserable and the rest of the tooth cutting will go smoothly.

No shots today - that was a huge bonus!  We don't need to go back until it's time for her 2 year visit (how is that possible?!), exception being for her flu shot and hopefully for Synagis, because Judith will have at least 2 more clinic visits between now and then.

Sunday, June 3, 2012

18 Months (or 1 1/2 Years)!

I simply cannot believe how fast time is moving, and I can't believe I'm writing an 18 month post already.

Judith, you are 18 months old (or 1 1/2 years old) today!  You are growing up so fast, and in the past 3 months you've had a developmental explosion!

Your highlights since your 15 month "birthday":

* You had your first positive throat/sputum culture for pseudomonas, and needed your first round of TOBI to eradicate it.  As a result, you got your first nebulizer, and learned how to deal with nebulizer treatments.

* The whole family and some of our friends participated in our first Great Strides walk to help raise money for you and the other 30,000 Americans who are fighting this disease.  Our walk alone raised over $107,000 and our team met the goal we set early on!

* We fought our first battle with the insurance company to try to get you coverage for your last Synagis shot of the year in April.  They denied the appeal, and we had to go under a stricter lockdown as a precaution.

* Your second Easter came and went, and you had your first egg hunt in our front yard.

* You had your annual evaluation for Early Intervention.  You were discharged from PT services because you started walking right before Easter, and it was determined that you would benefit from Speech Therapy.

* You had a couple appointments at the CF clinic, and 1 appointment at the NICU clinic.

* You are doing so many new things, and interacting with us, the dogs, your grandparents/great grandparents, and other people in new and exciting ways!

Judith's 18 Month Stats
Adjusted Age: 1 year, 3 months, 2 weeks, & 4 days

Weight: 19 lbs 7 oz (as of 4/2/12 - this stat will be updated later in the week after Judith's well baby visit)

Length: 29" (as of 4/2/12 - same deal with this stat as with her weight)

Hair & Eye Color: You are finally getting more hair, and are beginning to develop some tiny curls!  It has a reddish tint to it, kind of like Mommy's.  Your eyes have more brown in them, but are still leaning toward the hazel side as there is some blue around the edges.

Teeth: For 6 months, you have been a teething machine and working on those 1 year molars.  I am happy to say that you FINALLY cut your first one sometime between 5/27/12 and 5/28/12!  It's not fully in yet, and you definitely have 2 more queuing up.  We're expecting those to cut through at any time.  So far, your total tooth count is 9, but will soon be 11.

Clothing: You're getting to be a big girl - we moved you into all 9-12 month clothing this past weekend.  You wear size 3 shoes.

Diaper Size: You just moved up to size 4 diapers during the day, and still wear a size 4 at night.  They are still pretty big on you, but I'm sure you'll fit more comfortably in them very soon.

Diet & Nutrition: I can tell you're truly a toddler - you are getting so picky with your food!  We are trying to pump as many calories into you throughout the day as we can, and we're discovering new, high fat options every day to try with you.  Since we're in the summer months, some days you get a break from your Pediasure and are allowed to have some Gatorade with additional salt (for the really hot and humid days) in between your meals to help you stay hydrated.  So far, you have not been a fan of the Gatorade, but hopefully you'll adjust to it.  You're still drinking Pediasure as your main source of liquids, and consume an average of 24-32oz each day.

Developmental Milestones: You are doing so many different things since I wrote your 15 month post!
* Walking!  You're pretty fast!
* Trying to figure out how to run
* Chase the dogs and play with Lady, all while giggling up a storm!
* You babble like crazy, and are stringing together different sounds
* You started to wave bye-bye and hello consistently
* Words you are saying consistently and semi-consistently: baby, dada, Boo (for Buster), Dee (for Lady), boon (for balloon), bye, ba (for bang, said while we're watching The Big Bang Theory), dah (for done).  You can also sign "more" and "all done".
* You dump toys out of a bucket, put pegs into a hole, pull toys out of a container, and put toys into a container.
* You can turn the pages of your books, and love to point to different pictures and words!

Happy 18 months, Judith!


Friday, June 1, 2012

Teething Hell

One of the advantages of talking to other moms who have babies around the same age as Judith (her actual age, that is) is hearing about all of the milestones/other things they go through with their little ones - it gives me some perspective for what we will be in for in the coming months.  When so many of my friends talked about how bad the 1 year molars are, I kind of blew it off and thought, "Well, it can't be any worse than the rest of the teeth!"  I know we've been lucky so far, and Judith is a pretty good teether - minor fussiness, generally good eating habits, no major runny noses, etc.

Holy crap, how naive could I be?!  The last week has been a teething nightmare.  Judith's been working on these molars for 6 months.  6 MONTHS!  She's been worse than a beaver, chewing on everything she could get her hands on.  Sunday she was a little fussy, but nothing too serious.  Monday she was a complete bear.  I thought it was the heat until I decided to risk losing my finger and felt her gums.  Success!  She finally cut her first molar!  I realized then that her fussiness was due to that elusive molar making it's appearance in the lineup of her teeth.  A further investigation discovered that 2 more molars should be making an appearance very soon, as there were 2 very hard, pointy knots on her lower gum line, 1 on each side.

4 days later, and we're still waiting for something to happen.  It can't happen soon enough - last night she refused to go to sleep until 10, and that was only after allowing the tylenol to kick in (I generally don't give her anything for her teething pain, as I don't want her body to get too adjusted to it, but she was so miserable that I figured, "What the hell, it's not going to hurt anything!").  Her teeth have always emerged in sets of 2 or 3, so I'm not surprised that these particular teeth are queuing up.  But these suckers are so hard to come through, and I know she's miserable and cranky because of it.

I really want my happy, pleasant toddler back.