Thursday, December 26, 2013

Merry Christmas!

I'm a little late, but from our family to yours, we want to wish you a very merry Christmas!  I hope you all had a wonderful day!

Our Christmas, while typically chaotic, was very nice.  The church looked absolutely gorgeous with all of the trees and poinsettias set up, and I was pleased that Judith was really good during the service!  She was also relatively well behaved yesterday, and enjoyed opening all of her presents.  She's been having a blast playing with them today while I work on catching up on some of the house work that I let slide the past couple of days.  Hooray for distractions!

Of course we're very grateful and counting our blessings that Judith is doing well with her disease right now.  That is probably the best Christmas present we can get.

It's rare that I get a picture with Judith since I'm usually the one behind the camera, but thanks to a friend, I was able to get a great shot of the 2 of us on Christmas Eve!

Monday, December 16, 2013

3 Year Well Visit

Judith had her first visit to the new pediatrician this morning; not for a sick visit, but for her 3 year well visit.  I was really impressed with the new doctor, especially since she knew exactly how much Judith weighed at her last clinic visit, which means they're actually communicating and getting her information from the clinic!

Judith managed to surprise me yet again, and was really, really good for her visit!  She had a few moments of crying, especially at the beginning, but for the most part she cooperated and even chatted with the doctor.  Dr. C. got a charge out of Judith identifying a stethoscope and otoscope (with the proper terminology), and telling her what each was for!  I said, "Can you tell Judith absolutely loves Doc McStuffins?"  I have to say it really is hilarious to hear a 3 year old walking around the house saying, "Hey!  Where's my 'odorscope'?  Oh, here it is!  Can you say 'ahh' for me?"

Everything is looking and sounding good!  Judith's lungs are very clear, and her abdomen felt normal and soft.  Those are always 2 of my big concern points when we have a well visit or a clinic visit, and hearing that everything is good helps take away some of the worries.

Judith's 27 lbs 6 oz, which is right below the 25%, and she's now over 3 ft tall, but just barely!  She's 36 1/4", which is right above the 25%.  I can't believe we're finally hitting percentiles above 10%, but we still have some work to do to get her up to the 50% where she should ideally be.

Saturday, December 14, 2013


I've been actively participating in online forums ever since I got pregnant, and have met many wonderful moms and made some awesome friends in that time!  One of the nice things about being active on these forums is talking with moms who have older kids, because it gives me a glimpse into what I can possibly expect as Judith grows and develops.  It's also particularly nice and beneficial to be active in these various communities, because I have an additional support network, particularly for the CF front where it's incredibly difficult if not next to impossible to get together as a large group because of the need to find caretakers for the kids due to infection control policies.

Anyway, in recent months, I noticed a phrase popping up on the boards from moms whose children recently turned 3: "threenager."  I laughed at first, thinking, "That's a clever term to come up with!" and promptly dismissed it from my mind because I was in denial that 3 could be worse than 2.  I'm now here to admit that these other moms were spot on with their description, because for the last week I've been in 3 year old hell.  It's not like she's been 3 that long, either!  I remember saying that, when she turned 2, it was like a switch flipped and she became this little terror.  This year it's like a gigantic lever was pulled, not just a tiny little switch flipping.  Judith is so incredibly stubborn to begin with (and I don't have to wonder where she gets it from), but I swear right now she could give any hormonal teen a run for their money in the obnoxious and attitude categories!

We're dealing with a new host of behaviors that we weren't dealing with in the past.  I've had more days this week where I wanted to bang my head against the wall, rip my hair out, or sit in a corner while rocking and mumbling tons of incoherent things.  If I had a nickel for every time I've had to tell her to stop terrorizing the dogs, to use her indoor voice, to stop throwing things, etc., I'd be incredibly rich.  And it doesn't stop with the "normal" defiance, as she is now fighting everything CF-related.  She fights her vest.  She fights her twice daily albuterol treatments.  She fights her vitamins, although no one, not even her CF team, really blames her for that because the smell of the new formulation is enough to make anyone gag.  Probably the only thing she isn't fighting is her miralax, and that's only because it's thoroughly mixed into her pediasure so she doesn't even realize she's taking it.  I'm constantly thinking up new tricks and things to say to get her to comply with her treatments more easily, and to try to minimize our battles.  Since she's into hugging everything lately, telling her her vest "needs a hug" and wants to hug her back helps us get it on her without her going into "noodle" mode and making the prep time for the treatment about as enjoyable as wrangling a small, greased pig.  She's been getting a lot of screen time during her treatments, which means she's not trying to see how loud she can scream as often.  And the food battles?  We've cycled back to Judith not wanting to eat again, but now it's amplified by her 3 year old drive to test her boundaries as much as possible.  I talked briefly with our nutritionist, and she said that she knows we're doing what we can, but we're still going to try to come up with new strategies within the next week or 2 to see if that helps.

On the flip side, being 3 also means a whole new set of interactions, advancing play skills, advancing vocabulary, and lots of other developmental things that show she's growing up so fast.  There are days when I laugh hysterically at the things she says!  Like yesterday in the car while we were waiting to make our deposit at the bank: my mom and I were doing the silent laugh thing, because we kept hearing "Aw, come on guys!  You know what to do!" coming from the back seat.  I never know what comments she's going to make in church when the choir sings their anthem, and more often than not at least half of the choir is trying not to laugh at something she says.  Hearing her excitement for the upcoming Christmas holiday is amazing, and it's contagious because this is one of the first years where I'm really excited because I know she's going to love it.

I have a feeling this is going to be an extremely challenging year with her, but with any luck things will level off eventually.

Thursday, December 5, 2013

MRI Results

Normal!  So hopefully we won't have to do a repeat procedure anytime soon.

Wednesday, December 4, 2013

Spinal MRI

What's the best gift to get a 3 year old for their birthday?  An MRI under sedation!

Ok, not really, but that's the running gag in our house right now.  Nothing says happy birthday quite like going for a sedated procedure the day after your birthday.  It couldn't really be helped, though, because we had to get it scheduled within the approval window after the fiasco with the insurance last October, and this was the earliest they could fit her in since she needed extra time blocks because they were scanning her entire back.  But now it's over, and I'm hoping to hear from her CF team either later this afternoon or sometime tomorrow once her docs get to read the scans.

The fasting part went much better than I thought.  John and I didn't eat or drink in front of Judith so it would help take her mind off of things, and she only asked for her cup a couple of times.  Having a super early time block helped as well, because we were able to get her up, change her overnight diaper, load her into the car, and go.  Plus it gave us an excuse to get breakfast in the hospital cafeteria, which has some pretty decent food and fresh bagels each morning.

As soon as Judith got into the waiting room, she realized something was happening, and when she saw the nurse she started to get upset.  She really freaked as soon as the nurse pulled out one of the pediatric hospital gowns for Judith to wear, and it was a struggle getting her jammies off and the gown on.  She was a hot mess from that moment until she went to sleep after they gave her some of the gas.  Once she was asleep, they placed the IV to give the sedatives, and John went to get some breakfast for us while I headed back to the waiting room.

We thought the whole scan would take about an hour, and the nurse said it shouldn't take longer than that, but 2 hours later we were getting ready to ask someone if they could check on her status when the nurse came to get us.  The anesthesiologist told me that they were going to use the nasal cannula for oxygen, but it might be possible that they would have to intubate her.  The longer we were waiting, the more I thought that they probably had to intubate, which ended up being the case.  Judith was not a happy camper, and I could hear her crying outside of the heavy doors going into the pre-/post-procedure area.  She did settle down once we held her (well, once John held her, because apparently I'm made of acid and it burns to be held by me haha), and was pretty loopy.

While I was holding her, though, I felt some nasty crackling in her chest.  The doctor in the room listened to her lungs, and said she did have a lot of secretions in there.  I called her CF nurse as soon as we were in the parking garage and asked for instructions to help clear it out (extra vest time and albuterol every 3-4 hours).  They were surprised that she was intubated for the scan, and said if things don't improve to call them tomorrow.  So here's hoping things improve!

Tuesday, December 3, 2013

Happy 3rd Birthday Judith!

If you are new to our blog and are unfamiliar with Judith's birth story, you can read it here


Time is going way too fast, and I can't believe I'm writing your 3rd birthday post!  You have come such a long, long way from the little 2 lb 14.25" 29 weeker who barely fit into the tiny extra small preemie diapers, and are now an approximately 25 lb very active preschooler who talks nonstop and loves your doggies, baby dolls, Sofia the First/Disney princesses in general, and Doc McStuffins!  The challenges you have overcome in 3 short years is amazing.

You are our little warrior, and have not lost your urge to fight, which is something that will continue to be in your favor as you face the long road ahead of you with your battle against CF.  I know you've been through so much in 3 years, but your feisty nature helps you overcome the challenges.

Last year at this time, you were still having a language explosion and were adding new words to your vocabulary.  This year, you're still adding new words, but they're much bigger words (like stethoscope), you're stringing together big and complex sentences, and your imagination is taking off!  You know your basic shapes, colors, and your entire alphabet.  You can count to 12 (even if you skip or mix up the numbers here and there), and, thanks to Mickey Mouse Clubhouse, you're starting to learn how to count by 10s.  You love your books, and you love to sit on the couch and page through them, identifying the letters you see.  You're not as fond of sitting and being read to as you were in the past, but we're hoping this is a passing phase and you'll go back to wanting to sit on our laps to hear a good story.

You're starting to get very social, even though you try to play shy sometimes.  You made a new, good friend at church who is your age.  You enjoy playing with your second cousins, and your big cousin Kora (you like your other cousins too, but they're older and I don't think you quite know how to play with them since they play rougher than you're used to).  You like to talk to the dogs, and try to play with them every day.  You're learning how to feed them, and love helping your Daddy prepare their dinners every night!

You love watching Disney Pixar movies, and especially love the movie Tangled.  Every day you get excited to watch shows on Disney Jr., but especially love Sofia the First, Doc McStuffins, and Minnie's Bowtoons.  You love to play instruments, and will often serenade me on the piano throughout the day.  Whenever we go somewhere, you often have a baby doll in tow.  You absolutely love to make trips to Hersheypark and ride as many rides as you can, and also enjoy making trips to the playground!

I can't believe that I can start calling you a preschooler now.  You're certainly not a baby anymore, but you're no longer a toddler, either.  In other words, you're growing up way too fast!

Happy birthday, Judith!