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!

Saturday, November 30, 2013

Thanksgiving Reflections

I hope all of you, loyal readers, had a wonderful Thanksgiving holiday (and if you are not from the US, that you had a good week)!

We have a lot to be thankful for this year.  Despite the setback this past August, Judith's been doing really well with her health, and that's a huge blessing.  She still has a few developmental things that need to catch up a bit, but overall she's staying on track for where she should be.  You should hear some of the words she's starting to use, and the sentences she forms!  She's starting to get creative and really use her imagination, and some of the things she comes up with are absolutely hilarious.

Of course there's always the lingering thoughts over what happened 3 years ago, and those will likely always be there.  This year is the first year where it feels like it was such a long time ago, and I think I'm really starting to move past the preemie aspect of her life faster than I thought I would.

Last week I wasn't really looking forward to her birthday, but this week I'm feeling much better about it, and am starting to get excited.  Judith has been asking, "Can I go to my birthday?" for days, ever since we told her that her birthday is coming up.  Her excitement has helped me get excited, so much so that I actually wrapped her birthday presents Thursday night after we got home from our big Thanksgiving feast.  I've always been a procrastinator, but this year I'm on a roll considering I had her birthday and Christmas shopping completed at the end of October, and now have her birthday presents wrapped.

Both John and I are also in more of a Christmas-y mood this year, and it hit earlier than it has in the past few years.  Judith's way more aware of what's going on, and we're now able to do more things that we weren't able to do in the past because of cold/flu season and the precautions we needed to take.  Things like taking her to see Santa, going to Christmas Candy Lane at Hersheypark, and having her help/participate more with our Advent traditions we do at home.  She's loving the Christmas music, seeing things decorated, and has been asking about presents for almost a week.  I do admit that I've held out on playing my Advent and Christmas playlist during the day until yesterday (Friday), because I try to stick to my "not until after Thanksgiving" mantra, but it was extra hard this year with Thanksgiving being so late.  Now if we could get a small covering of snow, that would really make things festive!

Saturday, November 16, 2013

One & Done

I've been running out of blogging steam lately, and am at a loss for things to write about.  Judith's still doing well, and I'm very happy about that!  Our lives are seriously kind of boring since we haven't been venturing out as much because of the weather, and there just isn't a lot of indoor options in our area (at least that I'm aware of, and I fully admit I haven't done a lot of research on this).  So rather than bore you with the mundane details of our days, I thought I'd address something that's starting to come up for us.

Judith's going to be 3 in a few weeks, and we've had a few people ask us when we're going to have another baby.  Inquiries haven't been frequent, but they're starting to pop up and I have a feeling it'll start to come up more the older she gets.  This year our situation is something I'm having a harder time with, possibly because this is around the time that we thought we would start to try to have another child.  But if you've been following our story for a while, you'll know that it's something that can't happen.  Oh, the possibility is definitely there for me to actually get pregnant, but it's not advisable for us to risk it.  I have the severe preeclampsia to thank for that.

The majority of people are understanding when we say that Judith will be our only child, and even if they press further we tell them that we can't for medical reasons they accept the response and move on.  There are and always will be the few nosy turds who insist on spreading their agenda no matter what you tell them, and to those people I want to tell them to get a grip, check their filter, and learn a lesson in tact.  I feel fortunate that I haven't encountered many of the second type of people, but I have friends who are one and done who have encountered these types of people so I've been able to build up a small arsenal of responses that are polite yet to the point.

It really doesn't matter if someone is one and done for medical reasons or if it's by choice.  Please don't blow off the person's reasons and tell them they are "selfish" for only having 1, and then go on to say how your child will be "deprived" because they won't have a sibling.  The "selfish" reasoning can sting enough when said to someone who is one and done by choice, but to say it to someone who's one and done for medical reasons?  If you want my honest opinion, that's sinking to a new low, and is equivalent to kicking a dog when they're down.  As for my child being "deprived," I can guarantee you that she is most definitely not deprived of anything.  But thanks for your asinine assessment, random stranger that has absolutely no idea about our life, yet feels the need to go on and on about the "perils" of having only 1 child.

Do I sound a little bitter?  Yep, because I am a little bitter about our situation this year since we're approaching the time when we thought we'd like to start having another child.  I was able to push that reality off for the last couple of years because we were in survival mode or working to get Judith caught up, and the reality of being one and done was put on the back burner.  There's no denying it now, and while I'm starting to get back to a place where I'm ok with it, it's been difficult for the last couple of months.  It feels like the thoughts and emotions that I had after Judith's premature birth, and the grieving process I had to go through for the loss of the last 11 weeks of my pregnancy.

At the same time, I've been having days when I'm glad that the choice to be one and done was made for us by my body, because I have no idea how the heck I'd be able to handle more than 1 kid.  Judith runs me ragged most days, and add her therapies/treatments on top of that, and it's no wonder why I'm usually crashing in my bed by 9:30 or 10:00 at the latest.  I'm sure that if we were able to have another baby, I'd make it work, and we'd be fine.  But then those complex thoughts come back: the thoughts of not being able to have the choice to have another, and at the same time being content with our lives as a family of 3.

So as I run after my soon-to-be preschooler and listen to the crazily hilarious things she's saying these days, I wonder what it would be like to have another child, and wonder how Judith would interact with a sibling, but also feel blessed that we have her and feel content with our situation.

Monday, November 4, 2013

Halloween, Flooring, and A Birthday

We had a fun Halloween, even though the weather was unseasonably warm and a bit rainy!  Judith went to houses on 2 blocks before she tired out, and she got a decent amount of candy.  She was so excited to trick or treat, and kept asking me if she could "go to Halloween"!  She's still in love with her Sofia the First costume, and I have a feeling she might insist on wearing it to her birthday party in December (I'm planning a Sofia theme for her).

Over the weekend, she visited her great-grandparents and did some trick or treating with them.  That worked out perfectly, because she was able to stay with my parents for a bit while John & I stayed at the house and worked on some other things while the contractor finished laying our wood floors.  I'm glad that project is done, and the flooring looks great!  Eventually we want to rip the carpeting off the steps and redo that, and I'd love to lay wood in both bedrooms.  We also want to put tile in the upstairs bathroom (to get rid of the hideous '80s linoleum).  This'll likely be an ongoing thing, but it'll help update things!

While the contractors were here, I decided to work on the laundry that was piling up.  Let's just say I learned a good lesson about not overloading the washing machine, because I managed to cause the suspension rod to disconnect, and it created the most awful thudding in the washer.  I had a pretty large load to begin with, but there must've been more stray clothes in the washer before I dumped the basket in so it was a really heavy load.  Luckily John came to the rescue on Sunday and was able to fix it, and now it's running much better!  I was sweating bullets trying to figure out how to get all of my laundry done without a functioning washer, and kept thinking that if we had to call a repair person that it wouldn't cost an arm and a leg to fix.

Yesterday we celebrated another birthday!  Miss Lady is now 8 years old, and acts like she's still 4.  I noticed that she's becoming a bit arthritic, particularly when it's been so cold, so it makes playing a bit of a challenge at times.  I've also noticed that she's starting to slow down a bit, but when she has a ball, stick, or other toy to fetch she goes full throttle, and shows the lively spark that's always been there!  It's hard to believe the dogs are already 8, but we're thankful that they're healthy and doing well despite their "senior dog" status.

Thursday, October 24, 2013

Lab Results and Flooring

The carpet and really ugly '80s linoleum are gone from the lower level, and the hardwood is down!  It looks absolutely fantastic, and I'm really glad that we went this route!  We have a big delay with the upstairs because we were a box of wood short, and naturally the place we purchased it from didn't have any more boxes in this specific warehouse.  Instead of finishing the whole project this weekend and restoring the house to a less chaotic state, we have to wait until next weekend to wrap this up.  It's not ideal, but at least we can move things around in the lower level and get most of that back to normal.

On a separate note, I called the clinic yesterday and got Judith's test results.  Her team was at the big CF conference last week, so I wasn't able to get the results from her chest x-ray within a couple days like I normally can.  Good news is there is no change.  X-ray looks good, and they didn't note any significant blockages in her intestines (if they could even see anything).  Her throat cultures are growing her usual MRSA, but we're still going to monitor instead of treating aggressively at this point.

Tuesday, October 15, 2013

Big "Annual" Clinic Visit

We have regular, quarterly appointments for Judith at the CF Clinic, with other appointments in between when something crops up, but today's appointment was the big one with her annual labs.  Usually I can count on this appointment turning into an all day ordeal, but got a pleasant surprise today since we didn't have to wait long for any of her labs.

We started with our appointment with Dr. G.  Judith was being her typical  2 year old self, and kept declaring, "I don't want to say 'hi!' to everyone!", but was pleasantly cooperative for the nurses taking her vitals.

One of these days I'm going to remember to take more pictures to help document her visits since I forgot to take some of her on the scale and whatnot.  Anyway, I was excited to see that she weighed 27 lbs., and am cautiously optimistic that it's not because she's backed up again.  This puts her back up into the 15%, which is way better than the 3% she was at during her last visit.  She's also 35 1/4" tall.

Judith's exam with Dr. G. went well by her standards.  Last visit she figured out that clamping her jaw shut can delay Dr. G. from swabbing her throat for her cultures, so today she had a repeat performance.  He finally got the swab, and Judith was happy once she got a lollipop.  Everything is looking and sounding good, and Dr. G. seemed pleased with where she's at today.

The other half of the big annual appointment is labs.  Depending on the day and time, this part can take a long time with lots of waiting, or it can be a quick event.  Today we got lucky and it was a quick event.  We were the only ones in the waiting areas in the lab and radiology, so Judith didn't have as much of a chance to have a meltdown from a long wait.  She was not happy to be stuck with a needle to have her blood drawn or to have her picture taken, but all of the techs that we had today were really good with her and they got what they needed.  I'm not anticipating any changes in Judith's chest x-ray since her last one was clear, and don't expect anything unusual to turn up in her blood work.  I'm sure that her throat culture's going to grow her usual MRSA, and am hoping that nothing new turns up since her culture last month.

Monday, October 7, 2013


It's been quite a few days since I last updated.  Not a lot has changed, honestly.  Judith is doing well with her new glasses, although I think it's going to take a while for her to learn how to put them on herself.  She gets rather irate if she pulls them off and I try to encourage her to fix them on her own.  Ah, 2.5 year olds!

Things are kind of stagnant right now on the CF front, and I feel like we're in a small state of limbo.  Her annual appointment is getting closer and closer, and if I said I wasn't nervous to hear what her GI system looks like I'd be lying.  She's pooping, and it seems like it's where they want it to be, but I thought that the last time, too, and we still ended up having to flush her out at home.  Knock on wood, she's doing well on the respiratory side, so that's a definite plus.  I'm bracing myself for a rough cold/flu/RSV season, and have already heard reports that RSV is off to a strong and bad start.  Not exactly comforting news, but I do feel a little better about it since she's going to be 3 in a couple months.  That's probably also me expressing a false sense of security, but we'll see.

We've had some insane weather over the past week.  Unseasonable humidity, coupled with high temperatures, has helped to create a toddler monster.  The rest of us were cranky because it felt so gross outside (and we had removed our window unit air conditioners back in September), and Judith was twice as bad.  The air quality was good, and I stayed on top of her salt intake to make sure she got enough, and we made it through.  It finally feels like fall again, now that the cold front moved through (literally a couple hours ago)!

The house is also starting to move into a state of chaos, as we have boxes and totes all over the place.  We're slowly packing up as much as we can so we don't have to scramble to do it all at once.  The flooring will be arriving sometime next week, and the week after is when things will get extra chaotic.  I hope the weather is decent, because Judith and I will likely be spending a lot of time at the park while John is working on stuff at home during the install.  I'm pretty excited, though, because I'm more than ready to get rid of this old, ratty carpeting!

Wednesday, September 25, 2013

(Not Quite So) Wordless Wednesday

I just realized I never updated after Judith's eye exam last week.  Thankfully, there isn't a lot to report!  Everything's looking good, and while she struggled and fought the exam a bit, it really wasn't too bad and could've been much worse.  Her vision did change, but it wasn't anything major and was just the normal changes they see at this age as they grow and all.  So a new, stronger prescription was needed, and we also got a new pair of frames since her last pair was getting small.  These frames are bigger, and I'm extra excited for her because she has "big girl" temple pieces!  No more cables that wrap around the ear!  This means she'll be able to learn how to put them on herself, and she'll have an easier time pulling them off while I don't have to worry about her throwing the adjustment out of whack.  They're big, and we're back to a point where they're sliding down a lot (which means a lot of reminders from me for her to push them up so she can see properly), but it won't be long before she grows into them.

This is from Monday, after we picked up her new glasses:

Tuesday, September 17, 2013

Weekend Fun

We had a long and busy weekend, but it was a blast!  The weather was absolutely gorgeous, and I'm so glad that it's really feeling like fall.  The cool weather made our weekend activities that much more enjoyable, and it was nice to not be sweating our butts off like we were earlier in the week!

On Saturday we decided to go spend a few hours at Hersheypark.  It was a nice change to be able to walk around in jeans and a long sleeved tee instead of shorts and a tank top and still feel like you have to remove about 5 layers including some layers of skin just to cool down!  The temperatures didn't even get out of the upper 50s, which was unexpected as they thought it would get into the 60s, and with the cloud cover I was hoping that it would mean the crowds would be minimal/mostly locals would be milling around.  For a while, we didn't have to worry about long waits or bigger crowds, but as the afternoon went on it filled up so we decided to leave since Judith was starting to melt down anyway.

Sunday was more typical of what Sundays usually are, except we had the chance to go to my cousin's house so we could visit with them and my aunt and uncle.  They were at the shore for a few days, and stopped there before they headed home.  My decision to spend the day with Judith at my parents' worked out well, because they got to see Judith again.

On Monday, we had the rare treat of John taking a day off and being able to go do something fun as a family.  Normally when he has a day off he uses it as a work day for church stuff, but since the weather was awesome and we knew school was in session, we decided to go to Zoo America for the morning.  Judith had a blast looking at so many of the animals, and absolutely loved the fish in the pond in the bear habitat.  I wish I would've been able to take pictures, but my new camera body hadn't arrived yet (side note: I'm 99.99% sure my camera body was fried one of the days during Judith's hospital stay, because I stupidly didn't think to take it and myself out of the room the night they did the x-ray in there. It was a used body to begin with, and was a fantastic starter body to get into the DSLR world, but it was still an expensive mistake, and a really dumb one as well.  I learned my lesson, that's for sure.  And now I'm getting a super early birthday/Christmas present so I have a camera and can take lots of pictures again.).  She did well for the first half of the zoo, but about halfway through she just didn't have the attention span anymore so we called it a day and went to get lunch.  We're already planning to go back again in the next couple of months, especially since I want to try to hit the habitats she didn't really get to see because she was done.  Anyway, we finished off our adventure with a trackside lunch on our way home, and Judith was so excited to see 3 trains!

Wednesday, September 11, 2013

Cleaned Out

Judith had an appointment at the CF Clinic on Monday to follow up with her latest backup.  While she wasn't 100% cleaned out, we did manage to get the bulk of it to move!  There was still some poo stuck in the right side of her colon, so we had to continue doing the miralax 3-4 times a day to try to get rid of that.  Yesterday it looked like things were at the point her team wanted them to be at, and today we got the ok to go back to a regular diet instead of staying on liquids!  Yay!

I was concerned about a cough that was developing, and made a point to mention it during her visit.  Her lungs sounded clear, which is good, but Dr. G. decided to do a throat culture to see if there could be anything festering that's causing the cough.  I'm hoping it was just from all of the pollen in the air, and not the MRSA flaring up or even a pseudomonas infection.  I should know the results next Monday.

Being hospitalized really set back Judith's compliance with appointments.  We were on a good path where she was more ok with her doctors examining her, and didn't scream bloody murder, but those days have flown out the window.  While she didn't necessarily shriek like she has in the past, she did make herself as stiff as possible, was shoving away Dr. G's hands when he tried to listen to her, covered her mouth with her hand (that was actually rather amusing, because she didn't do it before and discovered that she could do that to try to prevent him from getting the cotton swabs in there), and clamped her jaw shut so she could try to avoid the culture.  I know it'll take some work to get her back on the better path again, but for now I feel bad for her because she doesn't quite understand that visits now aren't always going to mean needle sticks and NG tubes.

Sunday, September 8, 2013


Last Thursday, Judith and I had a long day at Hershey for some of her follow ups.  The main reason we went was for her 6-8 month check for her kidneys to monitor the necrocalcinosis.  But because of her recent hospitalization, her CF team wanted to make sure that she wasn't backing up again and ordered another abdominal x-ray.  I told them that we were already coming for this appointment, so they were able to send the orders to the lab so we could have the scan done the same day.  I knew it was going to lead to a long morning of appointments (and basically a long day period when you count the drive), but it was much easier to do everything at once rather than making multiple trips.

Our morning started with an ultrasound on her kidneys.  I wasn't sure how Judith would react, especially since we had to go into the children's hospital to get to the pediatric radiology department, but she was surprisingly chill as we walked in and checked her in.  Even during the actual scan she cooperated relatively decently.  I was able to keep her still enough this time, and we didn't need an extra person to help restrain her so they could get the shots they needed.  While we were in the department, we did the abdominal x-ray, and that was a little more traumatic for her, but at least it was over quickly. We then had about an hour to kill before her appointment with the doctor, and I was glad that she was content with my iPod and watching Sofia the First while we waited.

One of the neat things about PSHMC is it's a teaching hospital, so every now and then med students sit in on and participate in appointments.  Thursday was one of those appointments, and Judith was examined by a med student first, and then examined by the actual doctor.  I was proud of her that she was really good during the med student's exam and didn't pitch one of her more common fits.  Anyway, the renal specialist also checked Judith out, and both the doc and the med student said everything sounded good.  The doctor was able to read the ultrasound pictures, and the good news is nothing has changed!  She said that the ultrasound pics from a few months ago are practically identical, and they want to see that or improvement.  If the necrocalcinosis would've gotten worse, then we would have a problem.  We go back in a year for another check, and she said that if things still haven't changed (or if they start to improve), they won't need to see her again and will discharge her from their team.  Yay!

That was the high point of the day.  The bad news is we're right back at square one with Judith's GI issues.  Even though we've been giving her the miralax regularly like Dr. G. wanted us to do, her x-ray showed a moderate amount of buildup, and she was full of poop again.  When I called the team to see if they had her results and they told me what they saw, I was worried they would readmit her to do a flush  with Go Lightly, but they wanted to try flushing her at home instead.  Her team's really good about trying to keep the patients out of the hospital as much as they possibly can, so while I was trying to figure out the logistics of dealing with tons of poo on mostly carpeted surfaces.  It's been a relatively interesting weekend so far, and we're seeing results but I'm not totally sure if it's what they're looking for.  We need to do a repeat x-ray to see if the miralax did the trick, or if we'll have to resort to something stronger.  In other words, if there's still poo clogging things up, are they going to want to continue higher doses of miralax at home, or readmit her for closer monitoring and more Go Lightly?

Friday, August 30, 2013

Meds, Appointments, and A New Pediatrician

Earlier in the week, I expressed my... uh... frustrations with the pediatrician practice regarding the testing they did on Judith's poo.  I tactfully voiced my concerns at Judith's hospitalization follow up appointment Wednesday, and felt like they were brushing me off, so I talked to John and we made the final decision to switch to a different practice.  I called the new place the same day, and Thursday morning received a call back from the office manager to discuss things.  I was very pleased with the phone interview, and even though the new practice is much larger than the one we're coming from, they seem to have their act together better, they have a more efficient program in place for those with special needs, and their hours are absolutely awesome.  The only thing I had to do was switch Judith's secondary insurance to a different option because they don't accept her current secondary anymore, so if (and knock on wood this doesn't happen) she gets sick and has to be seen before October 1, we'll just have to pay our regular primary insurance copay.  We will, however, still be covered with all of her specialists.

Judith's CF team and I are still working on making sure her system's cleaned out and finding the proper dosage of Miralax to get her poo to the desired "ideal."  We're going to stick with the half cap twice a day routine for now, and I will take her for another abdominal x-ray so they can see if things are still clear in her GI tract.  I really need Judith to give me a good, dirty diaper that day as well so we can send a sample to the lab to get her exact elastice numbers so we can work out a monitoring plan for the future.

While I'm glad August is coming to an end and fall is around the corner, I'm not exactly looking forward to all of the appointments that are coming up, especially now that we have some extra ones thrown into the mix.  Judith has her follow up with the renal specialist to check on the calcification in her kidneys, she has her annual eye exam and we'll be ordering new frames (yay!), her big CF clinic visit with annual labs is quickly approaching, and now we have to add the x-ray, stool collection, and an MRI to the mix because they want to check something that turned up on her last x-ray when she was in the hospital.  I'm hoping that after all of this, things will go back to a more normal pace and will calm down a bit.

Tuesday, August 27, 2013

Checking for Pancreatic Insufficiency

... didn't happen.  I am FURIOUS with our primary pediatrician practice right now!  We didn't see our regular pediatrician almost 2 weeks ago when I took Judith in to have the tests run, but this doctor kept insisting that what Judith had was viral.  I know my child well enough to realize that this wasn't viral because the symptoms didn't line up with what they were like during previous viral infections, and her CF team seemed to agree with me.  It was almost like pulling teeth from an alligator to get this doctor to listen to what I was saying about her team wanting tests run to rule out various bacteria like giardia, and that they also wanted them to test the elastice in her stool to make sure her pancreas was functioning normally.  I also distinctly remember saying numerous times that her CF team was there to take her phone call if stuff wasn't clear or she doubted what I was saying and needed to double check with them.

Not once did the doctor leave the exam room to double check, but wrote out orders for a bunch of different tests and sent us home with the specimen kit.  I honestly don't care how arrogant this sounds, but dammit this doctor should've listened to what I was saying about calling her CF team to ask exactly what they wanted done, because she ordered the incorrect test!  On top of that, the office once again ignored the instructions from the clinic about faxing them copies of the test results, and I'm so over constantly tracking down the nurses at the pediatrician's office to get lab results and constantly riding them to fax them like they should've done initially.

Yes, I realize that doctors' offices are busy places, and they have tons of patients to worry about.  But how stinking hard is it to make a little note in the computer system to fax the lab results to the specialists that effing need to know some of the results of things you're testing for?!  The office had these lab results LAST WEDNESDAY.  That's right: the day Judith was admitted to flush out her system, her pediatrician had the lab results and didn't bother faxing them.  Faxing them would've allowed her CF team to see that the pediatrician ordered the wrong test, and we could've gotten a stool sample to send to the lab with her first dirty diaper after the Go Lightly was started (since that one wasn't liquid poo yet) and wouldn't have to wait even longer to see what her pancreas is doing.

I'm a fairly patient person, and generally very understanding of busy schedules and whatnot.  It happens.  But when the little things happen over and over again, it adds up, and then when something big happens it's the straw that breaks the camel's back.  I don't care for conflict, but something has to be said so they fix this and don't drop the ball again.

Monday, August 26, 2013

First Post-NICU Hospitalization, Part 2

As of Sunday, we still don't have Judith's pancreatic results, so we're not sure if things are still working normally or if we'll have to start enzymes.

I know Judith's CF team was being cautious and proactive, especially given her digestive and nutritional issues because of the disease and because of the pooping issues (including constipation) she's had since birth, but I had myself convinced that things were loose because of something else and not because of a blockage.

We arrived at the ER a little after 10:30 that morning, were triaged quickly, and taken to a room just as quickly.  The ER staff knew she'd be arriving since the clinic called ahead to let them know.  Judith was taken for her x-ray almost right away, and we knew the results relatively quickly.  The radiology tech and the pediatrician in the ER both said there wasn't an obstruction, but Judith had a "moderate" amount of poo backing up in her GI tract.  They had to send the results to Dr. R. (the pulmonologist on service, and who was covering for Dr. G.) to see what he said, and while we were waiting to hear back from him, they started doing a fuller history on Judith.  One thing that stuck out, and that the pediatrician kept coming back to, was that Judith had a meconium ielius about a week after birth when she was in the NICU.  He asked a lot of questions about it, and I was glad that I remembered as many details as I did.

In the meantime, my mom and I were trying to find ways to keep Judith entertained, and finally we turned on the TV so she could watch some shows on PBS while I offered her a drink of Pediasure from her cup.  Shortly after that, one of the nurses came in and said that Dr. R. had looked over Judith's scan, and said there was actually a significant amount of poo backed up.  Because of this and the fact that she was refusing the Miralax, he thought it would be best to admit her and flush her system.  I knew this was a possibility going into the ER for the scan, but was hoping we could avoid hospitalization.  I was nervous, because I had no idea what to expect with what they would do, and wasn't sure if Judith would freak out or not, but at the same time I knew that something had to be done and her team would take good care of her.

Stupid me brushed off packing a bag and my laptop in case we had to be admitted, so my mom had to drive back to my house, pack things for me, then drive back to the hospital (with my dad and John) with all of my stuff.  In the meantime, Judith and I were still in the ER, and the nurses started her IV and placed the NG tube so they could start the Go Lightly as soon as they got it from the lab.  I knew placing the IV was going to be a trip, but these nurses were awesome and really slick with the needles, and got it placed relatively quickly.  The NG tube was another story.  The last time Judith had one was in the NICU, so while I was very familiar with them and the placement, I had a feeling this would be an even bigger freakout for her than the IV.  My gut instinct was right, and Judith flipped out big time, complete with multiple mucusy pukes during her crying fits.  I really did feel bad for her, and tried to calm her down as best as I could.  Fortunately there were some wagons in the ER from the Child Life specialists, and one of the nurses got one for me so I could walk her around.  For a solid 45 minutes, we made loops of the pediatric section and the adult section, and Judith was busy charming the pants off of the staff.

By that point, my feet were hurting and I was tired of walking, so I took Judith back to her room.  Her Go Lightly had also arrived, and the nurse said we could start it whenever we were ready.  Judith needed a nap, and I was hoping she'd sleep, so I said we could start it.  I settled her in while the nurse got things hooked up and started a bag of fluids in her IV, and turned on some children's shows so Judith could watch while she fell asleep.  Go figure she never did nap, but at least she had some quiet time.

I was hoping we'd be able to get a room before my parents and John arrived, but that wasn't the case since the new children's hospital was pretty full.  My parents brought dinner for me (I hadn't eaten since breakfast), and by the time I ate and everyone came in for little visits, one of the nurses said they finally had a room for Judith and we would be transported shortly.  After a little more than 7 hours in the ER, we were going to get settled in.

While it's obviously no hotel, the rooms in the new children's hospital are NICE.  They're all private, and 2 parents can stay at the bedside if they wish.  John had to work, so I was the only one staying with her, but it was nice having such a spacious area to be in!  I had already changed 1 poopy diaper in the ER and was waiting for another one to come, but while I was waiting I got myself organized and things put away for the night.  I also met Judith's night nurse, and she was absolutely amazing!

Judith fell asleep quickly after John and my parents left, and soon after that I got into my jammies, settled down with the laptop, and turned on Duck Dynasty.  I was hoping to stay up a little later, but was physically and mentally exhausted so I decided to turn in.  Big mistake.  I should've stayed up a little longer, but thankfully wasn't fully asleep when I heard Judith stirring and trying to flip onto her stomach to sleep since that's how she normally sleeps.  I flipped her over, then heard the Go Lightly fully kick in.

I kid you not, this was the blowout of all blowouts.  If you've ever seen the Luvs commercial with the "pooping contest" to show how much their diapers hold, think about what the "10" looked like and double it.  If Judith had been in that commercial, she would've gotten a 20.  There was liquid poo EVERYWHERE.  Up her back, all over the linens, running down her leg and coincidentally ruining one of her new pairs of socks that I put on her since her feet were cold (those went into the trash as I didn't care to have them back).  We were fortunate that none of her toys or her Thomas blanket were hit, but I did remove them from her bed so none of them would be ruined as more blowouts happened overnight.  Judith was super pissed because of the blowout, but was even more upset when she realized I removed her Thomas blanket.  I felt horrible doing it, but I would've felt just as horrible if Thomas had gotten ruined by all of the poop and she would've lost him that way.

That blowout was horrific, and while there were certainly more that night and into Thursday morning, the others weren't quite as bad.  At least there was no question about if the Go Lightly was working.

Thursday morning, Judith's nutritionist stopped by, and we had a good discussion about different tactics to try to see if we can get Judith eating more and get her to gain more weight.  Her nutritionist was also surprised to hear that Judith had a meconium ielius while in the NICU, and that was the moment I realized that her CF team probably didn't get her NICU records like I had requested.  I have a feeling this might be a bit of a game changer, but at this point I'm not sure how much of an impact it will have.

As Thursday went on, her poo started to get closer to the state that Dr. R. wanted to see, and by evening I was hopeful that Judith would be able to get out of there on Friday.  We had the same night shift nurse that we had Wednesday night (yay!), and after she saw what the diaper looked like, she called Dr. R. and he ordered the next scan to make sure Judith was cleaned out.  Her nurse was able to stop the Go Lightly, and Dr. R. gave the ok for her NG tube to stay out since Judith was finally successful in yanking it out on her own.

I was hoping to get a little more sleep Thursday night since I was up pretty early that morning (thanks, random 5am thunderstorm), but it didn't quite happen that way.  I was still getting up for practically every diaper change, and got up again around 1:30am Friday when the radiology team came in to do her x-ray.  After tossing and turning for a bit and listening to Judith shift around in her bed, we both slept more soundly and started our day around our normal time.

Friday morning rolled around, and things were looking very promising for discharge that day.  Her x-ray looked really good, and Dr. R. wanted her to get some solid food into her system to make sure she could tolerate it.  Judith actually said, "I'm hungry!" earlier in the morning, and destroyed a cup of apple juice and a cup of orange jello, but still had plenty of room for more.  I got a wagon from the Child Life team and walked her around the floor for a bit until lunch time.  I was very pleased to see her eating close to her normal levels, and knew that as long as she kept everything down we'd be out of there in a few hours.

By 3:30 Friday afternoon, we were able to leave the hospital!  I know that so many kids have to stay longer, and there may be a time when Judith is going to have an even longer stay, but it was nice to be out of there within 72 hours.  The whole way home, Judith kept asking to "go see the doggies," so I knew she was feeling much better.

This was certainly quite the experience for Judith and for me, but at least I know what to expect if we have to go through this again.  She's been doing relatively well this weekend, and I'm hoping we can get her system regulated and adjusted to the new daily Miralax dosing that she's going to be on for a bit.

Sunday, August 25, 2013

First Post-NICU Hospitalization, Part 1

We've been lucky that Judith hasn't had a lot of major issues post-NICU, and has avoided major interventions for her CF up until this point.  We're still lucky that things weren't as bad as what they could've been, and that she wasn't super sick, but I knew she had to be miserable.

I started to notice that something was off a few weeks ago after we visited my in-laws.  She ate an awesome lunch for us (which is a rarity these days), but didn't eat a lot for dinner.  At the time, I chalked it up to exhaustion from a busy day, and the possibility that she may have upset her stomach a bit after getting into some cat litter and drinking a small amount of water from a puddle on the farm.  That Saturday, she was cranky, and that Sunday she was extra cranky and really not acting like herself. Since John had a Sunday off, we decided to go to church with my grandparents, and they noticed right away that she was not acting normally, even accounting for the new environment.  We went out for breakfast after worship, and Judith refused to eat her pancakes.  That was another big sign that something was off because she loves her pancakes, and it's something I know she'll consistently eat, but I didn't really think too much of it in the heat of the moment.  She started to have a crying fit, and I told John I'd take her outside.  By this point, I admit I was starting to get really annoyed with her attitude, and sat her on an outside bench for time out for her behavior in the restaurant.  She had herself that upset that she puked all over herself and me, and I noticed that it was really mucusy.

Not having her glasses was making it hard to see, and that combined with whacking her head was making us think that maybe she did give herself a minor concussion, so we decided to end our visit early and take her to an urgent care facility 1 town away from where we live (my grandparents were really pushing for us to do it, because they were concerned by how unusual she was acting).  John and I took her for a check, and the doctor there said she was fine, but that the bump on her head would likely take some time to heal.  That night, she had a massive poop that was really loose, and I was figuring she should feel better after that because she hadn't gone in a couple days again.

Monday came, and Judith's poos were getting looser, more mucusy and watery, and the color was turning more orange.  Concerned by the change, and knowing the situation with the cat litter and the puddle, I called the pediatrician and talked to a nurse.  She said it sounded like toddler's diarrhea, and since Judith was really only drinking at that point, too much liquid was the likely culprit.  We tried to get her to eat more to balance out her liquid intake, and I even tried to get her to eat a couple bananas, but the diarrhea continued.

Getting more concerned by the consistency of the poos and the color (and the random, mucusy vomit Judith had one evening), I called the clinic next and talked to the nurse coordinator.  She listened to the entire story and took some notes, then said she'd run everything by Dr. G. and see what he thought.  Not long after we ended the call, she called back and said Dr. G. wanted me to take Judith to her primary pediatrician to get checked, and to try to get them to run a stool study.

Off to the pediatrician we went, and had to see a completely different doctor since Dr. W. didn't have any appointments that day.  This doctor examined Judith, and kept telling me that it was "just viral," and it took me repeating that Judith's CF team wanted a stool study done a few times before she finally wrote the orders.  This doctor probably thought I was nuts, but I wasn't about to leave that office without the stuff I needed to, at the very least, collect poo for testing the fecal fat.

That night, Judith was able to provide us with a sample, and I was mildly freaking out because the color went from orange to the color of clay.  Naturally I decided to google what that could mean, and it only made my freak out worse.  You'd think I'd know better, but apparently I'm a glutton for punishment.  Anyway, I took her sample to the lab the following morning (which was an "adventure" in and of itself, and that's another long story for another time), then sat back to wait for the results to be available.

I was glad that we knew the results from the bacterial and parasitic tests by the following Monday, and everything was negative.  I felt much better knowing we weren't dealing with something gross like giardia!  So we were back to waiting for the results showing how her pancreas is functioning.  In the meantime, the diarrhea still wasn't letting up, so I called the clinic again to see what we should do.  This time, Dr. G. was on vacation, so one of the other doctors had to take care of things.  He said to give her 2 capfuls of Miralax, 1 capful at a time and over a 2-3 hour period, and call back in the morning with how many times she goes and what the poo looked like.

I knew things would get ugly with all of that Miralax going into her system, but started bracing myself for the inevitable blowouts.  I decided to start the Miralax after her nap, and had it mixed in her pediasure, ready to go.  As soon as Judith took 1 taste, she figured out it was in there and refused to drink it.  Great.  It was a losing battle, and I called in the morning to tell them she refused to take it.

The team and I did discuss that there could be a possible blockage that was causing the diarrhea, and because Judith didn't take the Miralax, they wanted us to go to the ER at Hershey that morning so they could get an x-ray of her GI tract.  So this past Wednesday, my mom and I loaded Judith into the car, armed with little bribes (some new Chuggington engines) that I normally keep for minor/routine visits, and made the drive to Hershey Medical Center.

Friday, August 23, 2013


It's been quite a while since I updated, and things got even crazier after the adventure we had with Judith whacking her head.  Very long story short, we were dealing with a week and a half of diarrhea, and went through the gamut of possibilities including possible giardia, c. diff, e. coli, and even pancreatic insufficiency.  Turns out Judith was actually pretty significantly backed up, but didn't have a bowel obstruction, and was "squirting" around everything else.  We just got home this evening after a 3 day stay at Hershey Medical Center's new children's hospital so Judith could get cleaned out.  I have never dealt with so much poop in my life, and it was certainly... interesting.  Apparently this situation isn't a super unusual thing to happen to a CF patient, but it's something I hope we can try to keep at bay so Judith doesn't have to go through it again anytime soon.  I felt horrible for her (and for the nurses, because some of those diapers were horrifying), and knew she was miserable.  But the good news is we got her cleaned out, and we're home.  We're all also exhausted, and I can say that both Judith and I are looking forward to sleeping in our own beds tonight.

I'll type up a more detailed entry or 2 over the weekend chronicling our adventure.

Sunday, August 11, 2013

Life Is Rarely Boring Around Here

This weekend was certainly no exception to that.  I should've taken it as a sign that it was going to be an interesting 3 days when I woke up Friday morning and saw how dark it still was outside thanks to the rain and storms moving through the area.  John had taken a day off, and we decided to go visit his parents and check out the "Free For All" event at their church (they hold it every year, and it's like a big yard sale except everything's free).  Last year we scored a bunch of clothes for Judith, and were hoping to do the same this year and try to get some stuff in advance so we could prepare for next year.  Anyway, John knew the target time that I wanted to leave by so we could drop the dogs off at my parents' house for the day and get to his parents' house early enough so we could try to get some good deals at the free for all, but in typical fashion of his side of the family, 80,000 different things had to happen to delay our departure and throw off the rest of the day's plans.  We were basically ready to go, and just had to load a few more things in the car when the toilet decided to clog and overflow in the downstairs bathroom.  It was really a minor thing, and it flushed fine after that, but it was enough that John had to clean things off and mop the floor while I entertained Judith enough so she wouldn't try to go in there while things were still gross.  1 clean bathroom and 1 shower later, we were finally on the road and had an uneventful (thank goodness) trip to my in-laws'.

Judith's not exactly a fan of big dogs, partially because she's not used to them and partially because many of them are bigger than her and intimidate her, so she was a bit cranky as soon as we walked in the house because the boxer was trying to kiss her and play with her in his excitement.  She was warming up to him a bit, but would still get annoyed when he would pest her.  During her vest treatment, he was hanging around her, and next thing I knew I heard her crying and John declaring that we had an issue.  Apparently Judith got knocked into a piece of furniture and whacked her temple on the unpadded part... with her glasses on.  She had a small cut on her forehead, a super nasty bruise on her temple (which is still there and will likely be there for a while), and completely destroyed her frames.  So much for making it to her annual exam in September without needing a new pair of frames!  I called her ophthalmologist and they ordered a new pair right away, but they probably wouldn't come in until Monday at the earliest.  I swear, this stuff only happens on the weekends when you can't get a speedy repair!

The rest of Friday was relatively uneventful, and Saturday wasn't too bad save for Judith being really cranky and continuing to look for her glasses.  Today, on the other hand, was pure hell.  She's sensitive to bright light normally, but it was worse because of the pounding headache she has to have from the head injury.  Because of the new symptoms cropping up, we took her to urgent care and had her checked out.  Everything looks good, and she doesn't have any other signs of a concussion, but it's going to take a long time to heal.  So between the pain from the injury and the sheer frustration of not being able to see, Judith's been absolutely miserable.  I'm hoping that once we get her new frames and she starts wearing her glasses again, it'll cut back on some of the tantrums and take some of the edge off of her headache.

I'm also hoping that this coming week won't be nearly as stressful, but we'll have to wait and see how that pans out.

Thursday, August 8, 2013

Fun at a Bounce House

Yesterday I met up with a group of mom-friends that I met online, and we had a get together at a local bounce place.  It was the first time Judith has been at a place like that, and she had a blast!  Given the location of this particular venue, I was trying to figure out how they got all of the inflatable equipment inside, but once we were in there and I saw how expansive it really was, I was impressed.  It's about $8 for a 2 hour session, and it's all open bounce during regular business hours so that's a big bonus.

It took Judith a bit of time to figure things out, but once she got going she had a great time!  When we first got there, there was a large group of older kids bouncing around, but it was pretty awesome to see some of the older kids helping out Judith and some of her other little friends!

I'm really grateful that we went to this place instead of trying to do what we originally planned (we thought about going to a local zoo, but the weather was really iffy, so we opted for indoor activities to be safe), because now I discovered yet another place that we can go to this fall and winter when it's too cold or nasty to be outside.

She was so eager to get into the moon bounce that I forgot to take her glasses off.  Oops!  Thankfully we didn't have any incidents and I didn't have to take her for a frame readjustment.

The toddler structures were a huge hit...

... as were the slides!

Thursday, August 1, 2013

Happy Birthday, Buster!

Buster turned 8 today!  I can't believe that my boy's getting so old.  I hope he has many more years with us, though!

To celebrate, Buster spent the day eating snacks (hand fed to him by a certain toddler who thinks it's hilarious that he begs and that she can feed him), getting scratches, playing with Lady a couple times, and taking some good naps.  In other words, things weren't much different than any other day for him with the exception of being another year older ha ha.

In all seriousness, I've noticed that he's becoming grayer in the face over the last year, and he's starting to get more white fur appearing down his back.  From the moment we adopted Buster and Lady, he's had white and gray flecks throughout his facial fur, but it's much more prominent now.  Buster never was a super active dog, and has always turned laziness into an art form, so it's hard to say if he's really slowing down but I have noticed that his bursts of energy aren't lasting as long and aren't as frequent.  Still, save for the pinched nerve in his neck that acts up every now and then, he's in great health!

Happy 8th birthday, Buster!

Monday, July 22, 2013

Culture Update and Vitamins

Normally if we don't receive a phone call, everything is normal with her cultures (and often her lab work).  I didn't receive a call, and honestly I didn't even think twice about it until this weekend!  So I called this morning, and her cultures were normal save for the same strain of MRSA that she's been culturing for a while now.  Normal cultures are always a good thing!

I'm hoping we won't have too many issues with her vitamins once I get her new prescription.  About a month ago, I called to get a new prescription because we were running low.  Previously I was getting bottles from the clinic, but because there was a slight shortage when we needed the new prescription, I couldn't get a bottle from them and we had to order them from the pharmacy.  When they arrived, they smelled HORRIBLE.  Like stale dog food mixed with stinky feet horrible.  Judith wisely did not take them, and I assumed they were bad.  I called the pharmacy after talking with our CF nurse, and we got a second bottle sent.  We had the same problem, and I decided to take them with us to our appointment.  As soon as the team walked in, they could smell the nasty odor coming from the prescription bottle, and said they would investigate what was causing it.

It turns out that the Aquadeks chewables underwent a formulation change, and they added more Vitamin B to them which was causing some of the odor.  Putting them in the orange colored bottle only made the smell worse.  So they were indeed safe to take, but the heinous stench was extremely off-putting to my toddler (and let's be honest, I don't blame her, nor would I want to take something that smelled that disgusting!).  We're going to try to get approval for more than a month's worth of vitamins so we can get them in the original bottle and hopefully avoid this stinky issue.  Keep your fingers crossed that it works!

Thursday, July 18, 2013

Happy 4th Gotcha Day!

Another year has passed, and we're celebrating the 4th anniversary of adopting Buster and Lady!  They really are a great and fun addition to our family, even though they drive me nuts sometimes.

Overall, they're doing well, but I can tell that they're senior dogs and are starting to show some age-related problems.  In the last year, Lady has injured her shoulder a few times after playing too hard, and the recurring soft tissue injury requires her to be on confinement for a certain amount of time.  Naturally she can't stand that, and gets upset with me because she's not allowed to play and has to rest.  She still has an insane passion for balls, sticks, frisbees, and anything else that can be chased, but she does tire out a little faster sometimes, and I think she might be developing some minor arthritis in her joints.  Buster's been suffering from periodic flare ups of a pinched nerve in his neck, and when he has problems we have to put his doggy neck brace (that our vet showed us how to make using a towel - it's pretty neat!) to help stabilize things so he can get some relief.

Buster's still as snuggly as ever, and like I said earlier Lady still enjoys playing!  They love to go for car rides, sleep, bark at the neighborhood dogs and assorted wildlife, eat, and come to us for a good scratch behind the ears.  They're much better about leaving Judith's toys alone, but they're not as good about leaving her food alone.  Buster in particular will follow Judith around anywhere if she has food in her hands, and she's also prone to toss him things because she thinks it's funny (we're working on that with both of them, and this is the major reason why she doesn't get anything that could be toxic to them unless they're in a separate room).  I am very pleased that they are tolerant with her, and patient with me as I work with Judith to treat them with respect.

We truly enjoy having them as a part of our family, and are blessed to have 2 great dogs!

Happy Gotcha Day, Buster and Lady!

Tuesday, July 9, 2013

CF Clinic

Today was Judith's quarterly CF clinic visit, and I'm pleased to say that I don't have a lot to report!  Things are still looking and sounding pretty good, and we're fortunate that she is remaining healthy.  She was her typical 2 year old self, loudly declaring "No!  I don't like that!" whenever she could, but once Dr. G. started examining her, she was fine and very cooperative.  Of course we have to wait a week for her throat culture results, but based off how she's doing I'll be surprised if anything has significantly changed since her last visit.

There was 1 thing that we have to really work on, and that her team is a bit concerned about: she actually lost weight since her last appointment 3 months ago.  Today she weighed in at 23 1/2 lbs, which means she's also down 2 lbs from her last appointment with her primary pediatrician.  We definitely have some work to do to try to fatten her up and to keep her from losing even more weight.  On a positive note, she is 34 1/2", so she's still doing well in the height department!

Thursday, June 27, 2013

Day Out with Thomas

Last Friday, we took Judith to the Strasburg Railroad for a Day Out with Thomas.  This is something John wanted to do with a future child ever since we found out I was pregnant, and this year she was old enough to appreciate it.

The day was warm, but not overly humid so that was a plus.  We knew it would be crowded, because it's the height of tourist season and the railroad is a huge attraction even when Thomas isn't there (having Thomas there makes it even more of an attraction), but really it wasn't too bad because they had things laid out well and there was a good flow to the foot traffic.

Our first stop was to the tent they set up that contained all of the Thomas gear you could possibly want.  We bought Judith a shirt, a Thomas die cast engine, and some stickers.  Next we took a picture with a blowup engine (I think it was Percy...), then walked around to see what else they were offering.

While we were waiting in line, I was able to get a good picture of Thomas returning to the station:

John and I were busy plotting which car we wanted to try to get on.  He enjoys riding in the open air cars, and given the heat of the day I was more than ok with riding in the open air car.  As soon as they started boarding for our scheduled run, we made a beeline for the last car so we could ride next to the caboose.  We had some awesome seats, right next to the exit, and Judith had a view of the inside of the caboose:

The ride was about 22 minutes long, and they only took it halfway down the tracks.  It's a nice length, especially for young kids who don't have a long attention span.  Judith was absolutely excited to be riding on a real train, and not just the ride trains they have at amusement parks:

We decided not to purchase the combo tickets this year (which would've given us a ride behind one of the steam engines), but in retrospect I wish we had done that.  Judith enjoyed herself so much that she would've loved an extra ride!

We got a nice family picture taken while we were on the train, and after disembarking from Thomas, we rode to the end of the yard on a restored trolley.  I wanted to try taking Judith for a ride on the hand carts, but by that point she was starting to melt down, so we decided to head back to the car and drive to the Red Caboose Motel to watch Thomas go by.

John and I talked about going back again one of the 2 times Thomas will return to the railroad, but I think we're going to wait until next year and try to go on one of the regular runs sometime in the fall.  There are just so many things to do while you're there, and I'm glad that we're still close enough to the railroad that we can take Judith multiple times if we want.

Wednesday, June 19, 2013

2.5 Year Well Visit

Judith had another well baby (or I guess that should be well toddler) visit this morning.  She wasn't in the greatest mood when she woke up, and I now realize it's because she's constipated again, so the visit was a little interesting.  It was almost like she was reverting back to the fits she had previously, but with a new twist: she was super clingy and was demanding I hold her almost the entire time.  I'm interested to see how she reacts at her next clinic visit.

Everything looks and sounds good!  She's currently 25 1/2 lbs (14%) and 34" tall (10%).  I'm excited that she's finally above the 10% range on the charts, but at the same time I realize she really hasn't gained a lot in the last few months, which means we're going to get an earful from the nutritionist at our clinic visit.  I'm still holding out hope that as she gets older, it'll be a little easier to get her to eat.

Friday, June 14, 2013

Awkward Encounters

The weather this week has been hit or miss, but there were 2 days that were nice and I was able to take Judith to our local park for a bit so she could burn off some energy outside.  Despite the very heavy rains and storms yesterday morning and the rain overnight, I decided that today would probably be a good day to go again since it was likely it wouldn't be as crowded.  So I packed her in the car, and we drove across town to the park, realizing that we would have the playground to ourselves as there wasn't anyone there at the time.

We were the only ones there for a good 10-15 minutes, and then 2 other ladies brought kids to play.  I was all over the place because my little spider monkey decided to climb to the highest parts of the structure (yep, I'm that parent) and kept acting like she was going to come down the poles instead of sliding down the slides like I kept encouraging her to do.  Finally she stopped threatening to walk over the edges and decided to play in some of the small puddles at the top of the slides.  One of the other women saw her, and struck up a conversation with me.

It didn't take long before the inevitable comments started to come.  We're literally talking a matter of a minute or less.  There was the initial exchange of "Awww, she's so cute!", and no sooner was that out of the lady's mouth the comments came.  "Oh, how old is she?  She can't be 2 yet!"  I said, "Uh, she's actually 2.5."

"No way!  She's so tiny!" The lady said.

In my head, I cringed.  But after 2.5 years of dealing with these types of comments, I'm prepared, and the speech is second nature.  "Yeah, she's a preemie," I explained.

Then the other questions followed, just like I figured they would, and I knew it would be exhausting.  I'm a fairly patient person, but having been through this so many times before I had to brace myself a bit so I could ensure I stayed patient.

"How early was she?"
"11 weeks early, she was 29 weeks gestationally."

"How big was she?"
"2 lbs."
"2 lbs?!  No way!  That's sooooooooo tiny!" (I thought, "why thank you for observing that!  I had no clue!")

"How long was she in the hospital?"
"2 months."

"Wow, that must've been really hard having her there for 2 months!"
"Yeah, it was rough." (although I was thinking, "No shit it was really hard!  I know we had it easier than some, but there were still some incredibly difficult and scary moments, and she almost died at the end of her NICU stay,")

"Did she have an easy stay?"
"She did relatively well."  (again thinking similar thoughts to what I stated above)

"How long did she have glasses for?  Is that a preemie thing?  How do they even know they have problems with their eyes?!"
::insert explanation about her vision here::

And then there was the statement that really caught me off guard:  "Wow!  She looks so healthy now!  That's so wonderful that she's such a healthy little girl!"

If I had a sound track for the moment, you'd hear that sound a needle makes scratching across a record. What the hell do you say to something like that?  I mumbled something along the lines of, "Uh, yes.  Yes she is!" and politely excused myself, wandering over to the slide to make sure Judith wasn't trying to lick the water off of it (and yes, I actually caught her doing it once and almost had a fit thinking about who-knows-what being in the water).  I just couldn't bring myself to go into how she's doing well right now, but she's not really completely healthy and is battling a life threatening, life shortening disease.

I'm usually pretty open about some things, because I see it as a teachable moment for many people, and a moment where I can try to bring some awareness to the issues.  Especially with something like CF, because so many people I've encountered have a lot of outdated information about the disease and don't realize how far research has come in recent years (which is understandable, because let's face it: before Judith's diagnosis, I harbored many of the same outdated pieces of information).  But something today stopped me.  Part of it was annoyance with all of the preemie talk, because at this point it's staler than a week old donut.  Part of it was irritation with overly nosy strangers who don't always check their filters before speaking and keep pressing and pressing for details while staring at my child like she's some sort of side show.  And part of it was not wanting to deal with more nosy questions and having to explain so many details about the disease when I would rather be playing with Judith at that moment.

Doing things like trips to the park are breaks for us from our regular CF routines, and it does help give us a sense of "normalcy" that we don't always get.  So while I'm patient and always polite to strangers who are asking questions, I don't think people really understand that craving for normalcy unless they've been through a situation like having a premature child or one who has a genetic disease/physical disability/mental disability/insert whatever special need here.  And frankly, at this point in the game, I really thought we had put a lot of these situations behind us, but I guess we'll still be dealing with some awkward encounters for a while.

Monday, June 10, 2013

Miscellaneous Musings

We had a pretty good weekend!  Judith continues to do well on the health front, so that's always great news.  I've been following the story of the young girl in Philadelphia at CHOP who has CF and is awaiting a lung transplant, and have done a lot of thinking about the disease, how close we are to getting the new drugs through the study phases and hopefully into the hands of patients, and even feeling sad because her condition is deteriorating so quickly.  It's yet another reminder of how much I hate this disease, and wish no one had to go through it.

On a lighter note, Judith and I had even more time together since John had a work day at church, so we took a trip to Target in the morning.  Our closest Target does get busy, but it's usually not super cramped and is often a pleasant shopping experience.  But Saturday's experience was even more awesome because we went right as they opened and only had to "share" the store with a few other shoppers.  We were able to get everything we needed and pay quickly, and were out of the store in under a half hour (score!).  I was planning to take Judith to the park in the morning so we could avoid the heat of the day, but it was pretty cloudy and things were still fairly wet so we skipped it.

Sunday we went to our choir picnic.  Go figure Judith refused to eat most things, but did manage to eat some cake for us.  I'm just grateful she ate something that was calorie-dense!  She was being a bit of a pill, and wanted to be on the move constantly because it was a new environment with lots of things to explore.  She wasn't too bad, but I could tell when it was time to leave and get her home for a delayed nap.  Judith also had her first experience with splitting maple seeds and putting them on her nose, and I even joined in on the fun at one point (Judith declared I was a "silly mommy" because of that).

Today was definitely an indoor day.  It rained for most of the day, and while the air temperatures were decent the humidity was up.  The highlight was meeting with the contractor to get an estimate for our new flooring.  We have the install date set, so now all we need to do is go shopping for something we like!  Both John and I feel relieved that we finally have this scheduled and it will be done by the end of the year.  We're going to do the lower level like we planned, but we're also going to do the upstairs hallway since that carpeting is the same age as the carpeting downstairs.  We were thinking about doing the steps, but we decided to wait until maybe next year to do those, and we'll probably also do the upstairs bathroom and both bedrooms.  The carpeting there isn't as old, but there are already some colorful stains on them thanks to Judith and her Pediasure (at least when she vomits it on the new floor, it'll be easy to clean up...).

Monday, June 3, 2013

2.5 Years!

I can't believe we're halfway to 3!  We're fortunate that Judith is doing well right now, and she's been relatively healthy over the last 6 months with the exception of those 2 respiratory infections and the double ear infection.

2.5 Year Stats and Other Interesting Things
Weight: 25 lbs, 8 oz
Height: about 34"
Clothing Size: Mostly 24m/2T, but 18m tops still fit.
Diaper Size: 4, getting ready to move to 5.
Eyes: primarily brown, with some blue flecks mixed in
Hair: light brown with reddish gold mixed in.  It's also starting to curl!

Likes: Mickey Mouse Clubhouse, Sofia the First, Little Einsteins, Jake and the Neverland Pirates, Phineas & Ferb, Sesame Street (Old School), reading, coloring, music, playing with the dogs, water/baths, bubbles, talking, vegetables, pizza, pastas

Dislikes: unfamiliar medical workers, medical procedures, being told "no," most meats, heat/humidity, getting really dirty, diaper changes, smiling for pictures

* Judith is adjusting well to the new church!

* She's starting to be a little more cooperative during doctor appointments.

* She was discharged from Early Intervention early!  She's catching up nicely with speech, and is starting to speak in longer sentences!

* Judith knows all of her capital letters, some of the lower case letters, can count from 1-12, knows many shapes, and is starting to learn her colors.

* She is enjoying the rides at Hersheypark.

* She gets along really well with Buster and Lady, and is getting much better with respecting them and their space!  She loves dogs in general, but is a little leery of big dogs since she's not used to them.

Happy 2.5 years, Judith!

Wednesday, May 29, 2013

Monday, May 27, 2013

Memorial Day

Today we spent some time at Hersheypark, and Judith had a blast!  We didn't do the water rides today since it was a little cool for that, and the water in the wave pool wouldn't have had a good chance to warm up yet haha.  She did get to ride on the kids' flume, and a few other rides, though!  I think it's going to be another year before she can start riding on a few more things, but for now she has a pretty good selection of rides that she can ride, either with us or on her own.

It was fun spending the day with my parents and my grandparents, and I know they all enjoyed watching Judith on the rides!  Something really neat happened to my grandfather today: he was wearing his Army hat (he's a Korean War veteran), and a group of teenage girls struck up a conversation with him about it while they were waiting in line to get ice cream, asking which war he served in, where he was stationed, etc.  One also gave him a hug!  He got his ice cream, and came over to us to sit down on a bench to eat, and the girls came over and wanted to talk to him more about it!  I thought it was so cool that they were interested in hearing his stories!

Sunday, May 19, 2013

Great Strides Walk!

Yesterday was the big day, and we had a lot of fun!  They changed venues from last year, and I wasn't quite expecting the hills we had to walk up, so my leg muscles are a bit sore today but it was definitely worth it.  I finally got to meet one of my friends I've been talking to online for the last 2.5-3 years, along with her adorable son and her husband!  I was also able to spend time with another friend, and also with my family.  I'm not sure what our final total will be, because we handed in a bunch of money yesterday and I know my parents have more to mail in, so I will update with a final total once I get it.

The weather wasn't too bad: cloudy, and there was a small shower at the beginning of the walk, but it was cool and great weather for walking!  They had a bunch of activities for the kids, including a clown and a guy who has reptiles (we kind of avoided that because he had a huge snake, and I don't care for snakes at all).  I got to talk to one of my CF mom friends, which was also great because we can't get together with the kids for obvious reasons.

This year, instead of doing wristbands, they made t-shirts for all of the CF patients so they would be easily identifiable and we could enforce the new 6 foot rule.  It did make a difference, and Judith also got her own shirt out of it.

I doubt we raised enough money for the team banner this year, but they did do team signs for every team that raised at least $200, so that was nice!  We're planning to hang it in Judith's room.  I know she's still too little to really appreciate it, but maybe someday she will.

Sunday, May 12, 2013

Week Recap

Things have been really, really crazy around here since I last posted, and I'll try to keep this post as brief as possible as I recap everything!

Last Sunday, I had Judith dressed and ready for church, and was doing her vest before we would have to head out the door.  Saturday night was rough because she kept coughing a lot overnight, and Sunday morning she had a really tight, croupy sounding cough.  Her vest treatment and an extra dose of albuterol didn't loosen things up, so we stayed home instead.  I called the after hours line for the clinic and talked to the on call doctor, and for a bit I was very concerned that we would have to take her to the emergency room and possibly end up with a transfer to Hershey Med so the CF team could start more aggressive treatments to help her out.  They changed her antibiotic from augmentin to cipro, and had us giving her albuterol treatments every 4 hours (4 puffs of the inhaler since we don't do the nebulized version with her).  We were thisclose to starting steroids, but the on call doctor decided to hold off a day and see what her regular pulmonologist recommended.  By the time I called Monday morning, she seemed to have more energy, and her cough was starting to sound wetter and looser, so her doctor said that we could wait it out a couple days and see if the cipro kicked in.  That was a good thing, because by Monday I was feeling like crap and didn't really want to go anywhere if I could help it.  Sunday was, by far, the worst day of the ordeal and she's been improving steadily ever since.  Judith was so kind to share her infection with the rest of the family, but at this point everyone seems to be improving and I hope this infection is out of the house very, very soon.

On Wednesday Judith had a follow-up eye appointment with her ophthalmologist.  Everything looks good, so we can space out her appointments!  She'll go back in the fall for her annual exam, and hopefully will only have a couple follow-ups after that.

Yesterday (Saturday) we celebrated my mom's birthday and threw her a surprise party!  I still can't believe we managed to surprise her, because she's really good at figuring things out in advance.  She really enjoyed herself, and I'm glad that she had a good time!  Today we celebrated Mother's Day at my parents' place and watched the Make-A-Wish convoy in the afternoon, followed by a cookout for dinner.  Judith was being especially challenging today, but I think in the end we all had an enjoyable day.