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!

Thursday, September 18, 2014

What We've Been Up To

I wanted to post a general update, and really had no idea what to title this post.  Things have been stable on the CF front since Judith's July clean out (knock on wood!), so I often feel like I don't have anything to talk about.  So I thought I'd share some of the interesting things that have been happening around here.

Judith's imagination is really taking off.  She's coming up with some interesting stories, and they're often making John and I laugh.  On the flip side, this also means she's coming up with scenarios that aren't real, but are scaring her.  Monsters in her room is a big complaint right now, even though she has her stuffed Mike and Sully from Monsters, INC to help her.  She knows they're good monsters, but more often than not she's ending up in our bed in the evenings, or will occasionally wake us up in the middle of the night.

We were able to spend a lot of time at the amusement park this season thanks to the cooler and nicer weather patterns that we've been in.  Judith tried some new rides and found new favorites that she wants to ride over and over again.  We went to the zoo this past Monday, and I thought she would enjoy it more than what she did since she loves to watch Wild Kratts on PBS.  It may have been her mood, and I want to try going again this fall, because it really is a neat little place.

John and I are getting increasingly frustrated with trying to sell the house.  It's not our realtors' fault by a long shot, and they keep doing everything they can to plug it.  I place all of the blame on the market right now.  It was slow in our area in August, and I'm not sure what September's looking like, but for us it's really discouraging that no one has shown a lick of interest in our house.  We're getting to a point where we can't continue to drop the price, and we're stressed that we could be sitting here longer than we anticipated.  It really is going to take the right person to come along and place an offer, but it's purely a waiting game for that to happen.  And I hate long, drawn out waiting games.

In the meantime, I'm planning out some fall activities for us to look forward to: trips to the local orchards for fall festivals, play dates with friends, and trips to the amusement parks when they're open.  There are some family events coming up as well that will be fun, and we're really looking forward to them.

Another Good X-Ray

Judith's on a really great streak right now, and her latest x-ray looked really good!  We're keeping her on the higher doses of miralax since that's working well for her, and I don't want to taper it back and risk her landing inpatient again so soon after the latest clean out.

Tuesday, September 9, 2014

Appointments, Appointments, and More Appointments

To say the month of September is packed full this year is an understatement.  We have a slew of appointments happening, which wouldn't be quite as bad if we didn't have to go for the regular x-rays to make sure Judith's bowels are un-dilating and going back to normal, but it's still a lot on top of the numerous plans and activities we have scheduled for the month.

Yesterday, Judith had her annual follow up ultrasound on her kidneys, and an appointment with nephrology.  This was to check and monitor the calcification they detected on her kidneys a couple years ago, to make sure things didn't get worse.  We knew going into the appointment that if things remained the same or improved, we would be discharged from their services.  I was very pleased to hear the doctor come into the exam room and say that everything looks the same, that they will attribute the problems to her prematurity (which apparently this isn't totally unheard of for some preemies), and will be discharging her from services!

If there's 1 thing I like, it's to be able to eliminate and knock a specialists off of the already long list that we see.  Especially since I know that the odds of adding more as the CF progresses is high.

The ultrasound was an interesting occurrence, and Judith did spend a fair amount of time during the scan crying and screaming in terror.  She had herself convinced that we were "just getting an x-ray," even though I explained that she was getting a different kind of picture taken that used a magic wand instead of a big camera to see her insides.  To say she was not amused with the scan is an understatement.  All things considered, it went well, but both my mom and I were exhausted because it takes a lot out of you trying to keep Judith still so the techs can get the shots they need.

Coming up later in the month, Judith has her next x-ray, and if that still looks good, we may only have to do 1 or 2 more before we can discontinue them (and hopefully won't need them again for a while).  I am concerned by the amount of radiation she's been blasted with since mid-July, including the multiple x-rays she had while inpatient, and will be relieved when she can get a break from all of that.

We also have her annual eye exam, which could prove to be an interesting experience since I know they'll dilate her eyes.  But Judith is so excited about being able to get new glasses that it's making me more excited to get her some new frames as well.  If I knew we could keep her current frames longer and still have a valid warranty, I'd do it, because they're in really good shape and she doesn't seem to have outgrown them.  I can guarantee that I'm getting the same brand, because it has been absolutely fantastic not having to worry about her snapping something constantly and going for repairs every few weeks!  The most I've had to take her for were some adjustments to the nose pieces, and in the last year I think I can count on 1 hand how many times that has happened.

Wednesday, August 20, 2014

Another X-Ray

On Monday we made the trek to clinic for Judith's next abdominal x-ray, and I was glad to hear that our team is pleased with her progress and things are looking good!  We're tapering down on the miralax gradually, because we don't want her to back up and end up inpatient again (at least if we can help it), so I'm hoping that will help her get back to a more normal pattern and we can start potty training again.