Wednesday, December 3, 2014

Judith Is 4!

A couple months ago, I was thinking about party plans because I knew Judith's birthday was coming up, but time really flew by, and here we are. Each birthday has been interesting emotionally, but this year I didn't have my normal thoughts about all of the events that led up to Judith's birth,save for 1 moment on Monday when I commented that the weather did the same freaky thing that it did exactly 4 years ago to the day: unusually warm temperatures in the mid-60s with rain.

The last couple of days, though, I had a mind blowing realization that helped put some things in perspective. At her last weigh in, Judith was 32 lbs. I'm not sure what her current weight is since we did not have her well child visit yet, but regardless, that means she is at least 16 times her birthweight. 16 times! Considering how much she's struggled with weight gain from day 1, having that figure sink in made me realize how far she has come in the last 4 years. Yes, the road has been frustrating, to say the least, but today I could put aside the stress and frustration over getting her to and maintaining a good weight for her health and celebrate her progress!

4 years ago, it was hard to imagine the future, even one as "close" as today. We were so focused on her survival and obtaining the ultimate goal of discharge from the NICU that I never imagined I'd have this sassy, funny preschooler who loves to talk, who is obsessed with Thomas & Friends and VeggieTales, and is such a bundle of energy who wears me out by dinner time each day. There is still a long, long road ahead of her, and many battles left to fight, both with some lingering preemie issues and with CF, but for today we pushed all of that aside and focused on her accomplishments and who she has developed into.

Happy 4th birthday, Judith!

Monday, November 10, 2014

Adventures with Respiratory Infections

For the last week, Judith's been fighting off some sort of respiratory virus.  She has a track record of getting sick around this time of year, so it's not exactly surprising that it happened.  The wrench in the pattern, though, was the croupy cough that kept her up most of last Monday night, and lasted straight into Tuesday and parts of Wednesday before starting to resolve.  As a result, her team put her on a 5 day course of oral steroids to help her out since upping the albuterol wasn't cutting it this time.

Getting her to take her antibiotics has been as fun as always.  Her strong-willed temperament was awesome when she was in the NICU and needed to be so feisty, but now it's backfiring against us big time and leading to some interesting situations when it comes to oral medicines.  No matter what I mask it in (save for 1 time when she took the entire dose in chocolate syrup, but wised up after that), she refuses it.  It makes me wish that there was a human version of the pill pockets they make for dogs, because I'm that desperate to find a method to get the antibiotics into her without her noticing that I would keep the company in business.  What it's really boiling down to is we're going to have to start teaching her how to swallow pills as soon as she can handle doing so, because I have a feeling that once she can't taste it, she won't fight it nearly as much.

I shouldn't be surprised by her reactions, though.  For starters, it's kind of reaffirming the nagging little thought in the back of my mind that there may be some lingering preemie sensory issues that are causing these reactions.  Judith can get really weird about certain textures, and even a really finely crushed pill is enough of a textural change to set her off.  The other side of this coin is genetics, and I know it's coming from me.  My parents frequently remind me about how hard it was to get any sort of liquid medication into me when I was Judith's age and even a little older, so I'd bet a cool $1,000,000 that a chunk of the issue is her taking after me.  Once I learned to swallow pills, things improved exponentially (if I'm remembering things correctly ha ha).  I can only stay optimistic and hope that Judith will be the same way.

We're about a week into the infection, and after a quick call to clinic just to make sure we don't need to add anything new or give her more steroids, it seems like she's on the mend and improving.  We don't need to do additional steroids at this point, and we just need to keep doing the best we can with the bactrim to try and keep the MRSA at bay since that always flares when she's sick.  Cross your fingers and toes that she continues to improve, and this is it for sickness for a while.

Friday, October 31, 2014

Quarterly Clinic Visit

Tuesday was a full day of appointments for us, the big one being our quarterly clinic visit.

One of the bigger changes that happened immediately was the method they're now using to get us into the exam rooms.  Earlier this year, the new, tighter infection control guidelines were accepted, which means our clinic had some changes to make.  We knew it was coming, but also knew it would take some work for them to implement it.  So instead of going to the main waiting room that we've gone to for the last 3.5 years, now we wait at the front of the office (with Judith masked, of course!) and one of the nurses comes out to get us as soon as possible, taking us directly to the exam room, where all of the vitals are done.

I really do prefer this method, and am glad our clinic is now doing it.  I've always been nervous in the waiting areas, because you don't always know who the CF patients are, and after talking to some other moms who go to our clinic I know there have been cases of parents who don't comply with the infection control guidelines and make their child mask up when they're in the main areas.  I am pretty anal about keeping Judith away from other kids in general when we're at clinic, because you obviously never know who has what and who could be a potential danger to her (and her to them), and just the thought of another parent not being fully compliant with the guidelines and potentially passing a bug to my kid kind of freaks me out.  In any case, with the new method of getting us into the rooms, this should hopefully eliminate more of the risk.

Going into the appointment, one of our biggest concerns was weight gain.  Our hospital recently set up one of the patient record access systems online, and our clinic participates in it, so having Judith's records at my fingertips and being able to look stuff up when I need to is really nice.  I knew when she was weighed at her nephrology visit at the beginning of September, she actually lost weight since her clinic visit in July, and didn't really gain anything since about April.  Her BMI also dropped, which had me even more concerned.  I had no idea what our team was going to suggest, but it turns out all of the worry was for nothing because Judith managed to gain about 3 lbs. in almost 2 months!  We also know the jump isn't due to a backlog in her intestines since her last x-ray a couple weeks ago was normal, so this gain is legitimate!

Judith's growth spurt wasn't just in weight, but also in length.  Since September, she grew about 1.75", and is now approximately 39" tall.  I thought some of her pants looked like they were already getting short!  She's weighing in at about 32 lbs. and a couple oz., and her BMI is somewhere in the 30th-32nd percentile.  So while her BMI still isn't at the optimal percentile (50th), she's now back on track for her normal and it's not in a zone of concern.

Since we've been working on potty training, I haven't had many opportunities to collect a sample to check the fecal elastice and get her numbers, plus they preferred to have it at their lab instead of us taking it to somewhere local and having other hospitals mess around with reporting results.  I was totally ok with that, because every other time we've done this in the past one of the local hospitals, which is also one of the few labs that will accept specimens, always screws around and never bothers to report results properly when the orders clearly state that they need to be sent to PSHMC.  Anyway, there's also the distance issue, since the sample would have to be frozen.  She's not showing signs of pancreatic insufficiency, so it wasn't an urgent thing to have done, but it's been over 2 years since we ran the last test and they want to see where her numbers are right now in case she may be headed in that direction.  We were able to get a sample on Tuesday, and her results should be back in 2 weeks or so.

As always, culture results will be pending for about a week.  I'm fully expecting the MRSA to still be present, but will be pleasantly surprised if it changes to MSSA, which is what we want it to do.

Wednesday, October 22, 2014

65 Hours of Silence for CF Reflections

Last week, I participated in the 65 Hours of Silence for CF event, where people would donate $6.50 (or more!) to a CF organization of their choice, then forgo the use of social media until their 65 hours was up.  Some people argued against going silent, but I fully supported this tactic.  Yes, CF needs a voice, and we have to talk as much as we can because of it being an orphan disease that doesn't have a lot of awareness; however, this is a case where I strongly felt like I've "screamed" enough (and I know people have even gone as far as to hide me on Facebook, at least for a few months out of the year, because of fundraising and whatnot), and I, along with thousands of others, decided that maybe it's time for the quietest voice or silent voice to try and gain some attention.

Like so many people, particularly those in my generation, I rely on social media to communicate with people and just pass the time.  I'm fully aware that I use it a lot, so I knew this could turn out to be a challenge.  I completely avoided Facebook, the online message boards I post on, and even went as far as logging out of Goodreads so I wouldn't be tempted to message some of my friends on there and therefore skirting the entire point of no social media.

I'd be lying if I said this was really easy.  So many times throughout the day, I'll reach for my iPad or my laptop and log onto Facebook to chat with friends or connect with other CF parents/patients and ask questions.  I intentionally didn't boot up my laptop until my 65 hours was up so Facebook wouldn't tempt me when I opened my browser.  During the silence, I often tapped on my "social media" tab on my iPad and was tempted to log onto Facebook or Messenger because it's a habit.  The first day (Wednesday) wasn't too bad, but by Thursday I was starting to get antsy.

Part of what triggered the itch to log back into Facebook was the realization that I didn't have my CF supports a click or tap away.  Thursday morning, during Judith's AM vest treatment, I noticed what I thought was a small leak near the part where the hoses attach to the vest.  I usually don't call the vest company right away unless the problem is really big or really obvious, and I will usually post on our clinic support group page or the big CF page to see if anyone else had a similar issue, and if it's normal or not.  With this leak, I wasn't sure if it was the normal venting that the inCourage does and I was oblivious to it until that time, or if it was a true problem that would require a new vest.

This time of silence made me realize how isolating this disease really can be, especially if you don't have access to the technology to make connecting with others possible.  Because CF patients aren't supposed to be around each other, it's really hard to connect with other parents who know exactly what you're going through.  Connecting on the internet is so fast and easy, and I'm spoiled that Judith is so young and I've had the ability to connect this way for her whole life.  I'm grateful that the technology is what it is, because as Judith gets older, she'll be able to safely connect with other CF patients her age, and talk about the disease along with other typical stuff.

I have to admit, though, that unplugging was nice, and taking that break was good for me.  I always knew that Facebook especially is a big distraction, so eliminating that helped me focus on other things when I had down time.  Most evenings I like to read or play games to relax, and right now reading is my activity of choice.  I've been working my way through George R.R. Martin's A Song of Ice & Fire (the Game of Thrones books) series, and I was able to make some great progress in A Storm of Swords.

I'm not sure if this event will be an annual thing or not, but I hope that it will be, and more people will participate next year.  I know I'll certainly sign up to do it again!

Tuesday, October 14, 2014

Latest X-Ray Results

Everything still looks good!  I'm waiting to hear back from our CF nurse to see if we need to do any more for monitoring purposes, but I'm hoping this one is the last one we'll have to do for a while.  The current dosing of the miralax seems to be keeping things moving well, which is good.

Judith's also been doing well with pooping on the toilet, and is mostly successful!  I still have her in diapers or a pull up during the day, but it's been so nice not to have to change a diaper full of nasty CF poo every day.  She still has some accidents and will go in her diaper, but it seems like the majority of her poops are going into the toilet.  Hooray!  The biggest issue is getting her to tell us before she has to go, and working toward that is our next step.

Tuesday, October 7, 2014

Food for Thought

I have to say that I’m fortunate to have a good support network, including some fantastic friends who don’t bat an eyelash when I do certain things with Judith, or have to cancel at the last minute because something happens with her and we have to add an extra treatment, boost her miralax for the beginnings of a clean out, etc.  There is, however, something that has been bothering me since the weekend, and I think it’s the timing because there’s a lot of stress in my life right now, which in turn can affect my mood.  I know it’s little things that shouldn’t bother me, and even though we’re still relatively early in our CF journey (although almost 4 years feels like forever) you’d think I’d be used to the weird stares, comments, and judgments from strangers.  I never quite understood the judgy, sanctimommy/sanctidaddy mentality that can plague some parents these days, but really, this is something that has got to stop.  You just don’t know what the person you’re trying to chat up is dealing with, and there’s probably a darn good reason for them doing something the way they are.

One of the things I really strive to do is advocate and bring awareness to CF.  It’s a fact that an orphan disease is not going to be encountered as frequently as something that is much more common, and people won’t know a lot about it unless they have experience with it.  That’s why I feel like I need to address some things, to get it out in the open.  Partially for my benefit, because I feel like I’m going to explode if I don’t, but also to try and make a difference.  If it causes someone to stop and think before being really openly judgmental, then I know it will have made a small difference.

Please don’t stare at my child like a freak if she’s melting down before or during a procedure.  There could be any number of reasons that trigger this reaction.  For her, one of them is due to the fact that she’s been through a ridiculous amount of procedures in her short life, and she’s over it.  Now that she’s at an age where she can understand what’s going to happen before it happens, it can make things trickier.  It’s embarrassing enough when she’s having a meltdown in public, but to have really judgmental stares levied on us doesn’t help.

Why yes, we are aware of the obesity epidemic in this country, and are aware of the dietary guidelines pediatricians recommend!  We offer plenty of healthy options, but guess what?  Those dietary guidelines go right out the window with a disease like CF, and you have to pump a ridiculous amount of calories into a small body to get her weight and BMI to a level where it’s going to give her a better chance at better lung health.  It’s not easy when your child needs to eat more calories than many adults.  So you can stop right there with your side eyeing and judging when I offer high calorie things in large portions when a typical kid should receive a smaller portion or not eat that particular food often.  If you think Paula Deen uses a lot of butter, you need to spend a day with a CF family.  I’d be willing to bet large sums of money that the amount of butter Ms. Deen uses in her cooking pales in comparison to the amount of butter CF families consume in any given year.  And no, I’m not setting my kid up for a life of early onset hypertension by salting her food, nor are we neglectful parents for allowing her to have all of that sodium in her diet.  Salt is necessary for her to have so she can replace what she’s losing, and this is even more important in warmer weather.  You worry about what you and your family is eating, and I’ll worry about mine, thank you very much.

I know this one is hard, because of the stigma that often goes with a surgical mask, but please don’t make snide comments like she has the plague when you see her wearing a mask.  Not everyone who “masks up” is sick; there could be any number of reasons why they’re doing it, and it’s likely they’re doing it for their own protection so they don’t catch something from you.  I know, it’s hard to discern who really is sick and who is doing it for their own sake, but I guess the big issue I have is when people make audible comments about it.  No need to be rude.  If you’re unsure, it’s perfectly ok to quietly move away and move your child away (if you have a child with you), just don’t be a jerk about it.

Conversely, if I’m quietly moving my child away from yours after you stand there and loudly declare about how her twin sister was actively puking in the car on your way to the building, and both have been coughing a lot recently, don’t make nasty faces at me or judge me for doing what I am.  Just like you might feel a natural inclination to move away from someone you see wearing a mask, I feel a natural inclination to go into protective mama bear mode and minimize the risk of exposure to whatever illness your child has all while trying to teach my child to move away from and stay distanced from people who are sick for her own protection.  Yes, you are right that kids pick up germs, and will be exposed to them.  I get that.  I try not to keep my child in a bubble even though there are plenty of times when I want to seal her up in one.  What I’m trying to do, though, is minimize the potential for something to set up shop in the extra thick, sticky mucus in her lungs and cause irreversible damage.

Lastly, don’t minimize what we’re going through, and please don’t compare it to another disease.  Every disease or condition has it’s own challenges, and they can’t really be compared.  If we’re opening up and talking to you about something that may scare you, don’t brush us off and tell us it can’t be as bad as what we think it is.  Truth is, it might be that bad or worse.  It could end up not being as bad as we think it is.  We just don’t know, and the unknowns are scary.  Oh, and please don’t dismissively tell us that our child will “grow out of this.”  All that statement does is show your ignorance about the disease, and it manages to piss us off.  Do we expect you to go out and research every last detail?  Heavens, no.  That’s unrealistic.  All we ask is that you don’t make an asinine statement along the lines of “growing out of it,” and if you’re unsure if it’s curable or not, ask.  We’d rather take a few seconds to answer your question and help you understand than dealing with the raised blood pressure that’s going to result from you not checking your filter before speaking.

I know this was an especially long post, but thank you for bearing with me.

Tuesday, September 30, 2014

Vacation Adventure

Ever since Judith was born, we haven't been on a true vacation, and have done staycations instead when John takes time off.  The hassle of dragging tons of gear with us while traveling with an infant or young toddler was enough to cause me to say, "Screw it, it's not worth the hassle!"  Yes, I realize thousands of people travel with infants and young toddlers, and do just fine.  For us, it was a hassle since we would have to try and cram extra equipment into one of our cars (which are both on the small-ish side), and we were content doing day trips instead.

This past weekend, though, we decided to finally do our first hotel stay with Judith instead of spending 8 hours round trip in the car, which was not appealing to us.  John's side of the family had the annual reunion in New York, and we knew early on that we wanted to go.  John was able to use one of his vacation Sundays so we could spread out some of the travel time and not drive ourselves crazy trying to do everything at once.

The weather was gorgeous, and was unseasonably warm, so that was a pleasant treat.  The drive north went smoothly, and Judith was actually really well behaved.  We were hoping she would take a nap, but she was way too curious about the passing scenery and too interested in the activities we had in the car for her that sleep was really low on her priority list.  John and I were both hoping for some awesome foliage because we knew that the leaves should really be changing a lot, and there were some really gorgeous pops of color, but there were also spots where it was still really, really green.

Our hotel was able to check us in early so we could squeeze in a vest treatment before we went to John's cousin's house.  I was trying to figure out when we would be able to do treatments because the schedule was really full, so being able to do it earlier than I thought was a nice bonus.  I was also glad that Judith didn't try to fight us when we said it was time to do her treatment, and I think the novelty of being in a new room (and letting her explore a bit before we started) helped.

We had a wonderful time at the reunion, and it was great to see John's side of the family again!  We haven't had a chance to see some of his cousins in quite a few years, and most, if not all, of his cousins were meeting Judith for the first time, so catching up was really nice.  Judith was able to play with her many cousins and had lots of land to explore.  I still have to chuckle at how fast the Philly Pretzel Factory rivets disappeared, and John and I were already talking about what we're going to do next year since we think we're going to have to take more.  We intentionally decided to take the pretzels because we knew it was something that most of his family couldn't get where they live, but John didn't think people would go so crazy over them.  We were only going to take a box of 50 rivets, but I got 2 boxes for about 100 total instead, and I'm so glad I did because 50 never would've been enough!

Saturday evening we drove around a little bit, and went to the Wegman's grocery store that was nearby.  I've been to Wegman's before when John and I camped along Lake Erie before we were married, and I always enjoyed shopping there.  We don't have one really close to where we live, so this was a treat, and I knew I wanted to get a couple boxes of their half-size spaghetti that one of my friends posted about on Facebook the other week.  I know that sounds like a silly thing to get, but I never saw this before my friend posted about it, and I hate breaking regular spaghetti in half whenever I make it because I always manage to scatter pieces all over the place.  I do love my pastas, so I also went nuts over the selection they had, and for a good price!  I didn't purchase a lot there, because I didn't want to travel with all of that and risk most of it breaking, but we did decide we're going to bite the bullet and drive to the nearest one to stock up on different types, and to also get some of their other tasty things, like their baked goods.

Sunday morning we had the opportunity to worship at one of the churches John grew up in.  Having this opportunity was especially awesome, because it's not something that we can do often, and people were so glad to see John again.  One of the members there has an adult son with CF, and she was really excited to meet her in person.  After church, we headed home, but we wish we could've spent an extra day there so we could've done some touristy things before leaving.

I was really impressed at how well Judith handled the trip.  I was nervous about the whole traveling with CF thing, and figuring out the logistics of getting treatments completed while on the road and in a hotel room.  Granted this trip was probably easier than what it could be or what it will be in the future, because we don't have to worry about nebulized treatments.  It does, however, make me think about things like using the flutters once she's old enough so we don't have to drag her vest if she doesn't want to, and also about the amount of space we used in the car.  It's not something that we're going to jump on at this point, but I think we're going to have to consider getting a slightly bigger vehicle if we do decide to travel more frequently.

Overall, though, things went really well, and went more smoothly than I anticipated.  We're fortunate that Judith is usually good in the car under normal circumstances, and I think that, along with new activities and distractions, helped her on this trip.  We had such an enjoyable time that we're already looking forward to next year's reunion!