Tuesday, December 30, 2014

4 Year Well Visit

Judith had her 4 year well visit this morning, complete with booster shots.  I wasn't sure how things would look because she's been fighting off a cold, but her ears looked good and her lungs sounded clear.

This year was the first year that they did a vision and hearing test on her.  Everyone thought the vision test was ridiculous because we know she has vision problems and is clearly being followed since she's wearing glasses, but because we have secondary insurance through medicaid (our state has a Katie Beckett Waiver lookalike program, which means kids who have CF and certain other conditions automatically qualify for the program, regardless of income) they had to do it and submit the results.  I didn't even think about the fact that our ophtho doesn't accept the medicaid plan that we need to have for her primary pediatrician, therefore they wouldn't know that she's being followed at least bi-annually (quarterly right now) by a specialist.  We did the best we could with the vision test, and I'm sure they'll make a note about how we're already being followed.  The hearing test was interesting, and Judith didn't quite understand what she was supposed to do.  We were finally able to get her to tell us if she heard a sound instead of raising her hand like they wanted.  She didn't fail the test, but it wasn't stellar either.  Her PCP wants us to see an ENT and get a more comprehensive test to see if there is something going on or if everything is indeed ok.  Some of the concern is stemming from the antibiotics she was on in the NICU, particularly those that she had to take to get rid of the late-onset group B strep infection.  So it looks like we'll be adding another specialist to our list.

Judith's eating habits have been poor lately, so I'm not surprised that she lost about half a pound since her October clinic visit.  Today she weighed 31 lbs 8 oz, which puts her at the 25%.  She did grow again, and is now 39.5", which puts her smack in the middle of the curve at 50%!  2, 3, and even 4 years ago I wouldn't have guessed that by age 4 she'd be that high on the curve for height, so it was a pretty awesome percentile to hear!  The downside, though, is her BMI.  I calculated it on the CDC's website (you can find the calculators here if you're interested), and she dropped back down to the 13%.  Clinic is a little less than a month away, so we'll see what things look like then, but it's pretty discouraging to see her have such big gains 2 months ago, and then suddenly slip back to where she was in such a short time.

I opted to get both sets of boosters for Judith at this visit so we could get it out of the way.  The vaccines were combos, so the MMR and varicella were combined, and the DTAP and polio were combined, so only 2 needle sticks, which still was akin to torture according to Judith.  She cried more before the shots, stopped as soon as it was over, then got overdramatic and held her arm as stiff as possible, acting like she couldn't use it at all.  Silly kid.

Despite the few blips, the appointment was a good one, and her pediatrician is pleased with the progress she's made in the last year and is impressed with how well she is doing with her CF.

Wednesday, December 24, 2014

Buying and Selling

I wanted to wait until I had my laptop fixed to type this whole story up, because it’s going to be long and would’ve been a pain to type out on the iPad.  Yes, I could’ve used my wireless keyboard, but we’ll ignore that little fact because I also simply kept forgetting.  :)

Back in mid-November, we started to get showings on the house.  Within the span of 1 week plus 1 day, we had 2 showings, and the 2nd showing resulted in an offer on our house.  We were surprised that, after being on the market for about 5 months, we suddenly got some interest, and were thrilled at the offer.  Negotiations lasted a little more than a week because of some delays with the man putting in the offer, but we got to a point where we knew we’d be signing the paperwork to go under contract, and scheduled showings to go look at properties so we could get under contract on a house to buy.

We found a house that we really liked, and it was in fantastic shape.  The sellers were willing to be a bit fluid with closing dates, and we set closing for the date we knew we’d be closing on our current home, but they were aware that we might have to submit an addendum to bump up the closing date since our buyer really wanted to close as quickly as possible.  Inspections were being lined up on the properties, and John and I thought we were crazy for trying to close on December 19th or December 30th since the holidays are notoriously a 3 ring circus around here.

Fast forward to Thanksgiving Eve, and our realtor gets a call from our buyer’s realtor saying that our buyer wanted to back out of the deal because of an “issue” he was having with his son (before you think I’m being totally callous, the issue is not related to special needs, but to some poor decisions, and as you’ll see later, makes me question the legitimacy of some of this anyway), and a supposed denial of funds from another source.  Our realtor called me the Friday after Thanksgiving, while I was packing, to update me.  Cue freak outs on my part and John’s part.

We were able to work things out, and since our house is USDA loan eligible, the buyer was able to change his mortgage type and get established with that particular loan type.  That also meant closing would be bumped to mid-January, and the new closing date of January 16th was set.  While John and I were hoping to move either right before or right after the holidays, this actually worked out for the better because of the government holiday on the 19th for Martin Luther King, Jr. day, which means John wouldn’t have to take additional PTO to help unpack.

Our realtor got the earnest money check, and after verifying funds, cashed it so we could keep the process moving.  We thought we’d have to postpone the home inspection on the property we were buying, but after hearing things were good to go, we decided to go through with our home inspection since John already had the time off, and he wasn’t sure if he’d be able to take another day off before our inspection deadline.  Our mortgage broker was getting the appraisal lined up, and things appeared to be back on track.

1 week later, the shit hit the fan and we get a phone call from our realtor, saying that the buyer’s realtor called him to let him know that the buyer “cancelled” the earnest money check, and she couldn’t track him down.  Our realtor was on the phone with the buyer’s mortgage lender, seeing if they could track him down as well, and he also tried to contact this guy.  No luck.  John and I were crushed and pissed, because we knew that we now lost the property that we fell in love with and were going to purchase, but we were also out the costs of the home inspection that we just had done a few days prior.

As if things couldn’t get any more bizarre, a couple days later, our realtor called again with an update and it turns out that the buyer actually wrote a BAD CHECK.  I instantly went from being upset, feeling very guilty about backing out of the deal with the other sellers even though our contract was specifically written with the contingency of sale on our current property, and slightly pissed about the whole situation to flat out raging!  This guy was shadier than a tree in summer, and he knew exactly what he was doing, so it’s no surprise he hightailed it off the grid and made it so no one could contact him!

Because of the way the contract was broken, the deposit was supposed to be forfeited, which meant we would’ve recouped the money we paid for the home inspection on the other property.  People at our realtor’s agency were also pissed, and they decided to go after the jerk for what he did.  I know that they were going to place a judgment on him to try and get the money due, but when we’ll actually see that money (if at all) remains to be seen.  At least we get our earnest money back from the other property, otherwise I really would’ve gone Hulk on the former buyer because that’s a huge chunk of change that we would’ve lost.

So we’re back on the market.  We had an open house a week and a half ago.  1 person came, and it sounded like he’s at least marginally interested in the property, but no offer yet.  The market is expectedly and understandably dead right now because of the holidays, but we’re hoping that the weather will hold after the new year and things will pick up in January or February.  We’re not worried about selling, because it’s going to be a matter of when, and if we don’t get back under contract soon, we have the benefit of being on the market in the spring when things are the busiest.

We’re also not incredibly worried about finding a house to move into.  We fully realize that the likelihood of the house we were going to buy being on the market once our house is under contract again is slim, but the sellers and their realtor said that if they’re still on once we’re under contract, they would be happy to accept our offer again.

I’m usually not a fan of this saying, but with everything that went down, we do feel like that maybe this was a sign that that particular house wasn’t “the one” for us, and “the one” is either on the market, waiting for us to go under contract, see it, and place an offer, or isn’t even on the market yet.  We’re doing our best to view the positives in this whole situation.  Trying to explain all of this to Judith, though, has been interesting, because she was getting excited to move and doesn't understand why all of the boxes went back into the basement and we had to re-stage everything.

So that’s what we’ve been up to.  An already crazy time was made even more chaotic with the bullshit from the former buyer, and in a way I’m rather relieved that we don’t have to deal with his shenanigans anymore.  I’m still a bit salty about the whole situation, and it kind of killed our holiday spirit, but we’re doing our best not to let it get to us too much and to just enjoy ourselves.

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!

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.

Saturday, August 9, 2014

Gross Things That Can Set A CF Mom Into A State Of Panic

Because of the thick, sticky mucus that resides in a CF patient's body, germs have a tendency to really set up shop, fester, and cause big problems.  I find that I am and was no different than a lot of CF parents, especially when Judith was so little.  If you've been following us for a long time, you may remember reading about our times under lockdown to protect her from a bad flu outbreak, RSV, etc.  And as a new CF parent, I wanted to sanitize everything and was pretty anal about who and what Judith came in contact with, just to name a few.  There are still things that I won't let her do (barefooting it on a hospital floor, for example), and honestly I wouldn't let any child do that because hospitals are gross places.

There are also many things that I have learned to relax with so Judith can have as normal a childhood as possible.  CF is a part of who she is, and yes we do have to revolve some parts of our lives around treatments and appointments, but I also don't want it to become so consuming for her and us that she won't get to experience some normal childhood things.

As a side note, I totally realize that this is what WE are choosing, while other families will choose to do something else.  And that is completely ok.  No two families are the same or function the same, just like no two people with CF will be affected by the disease in exactly the same way from every angle.  The important thing is choosing to do things that work for your family and your individual situation.

I admit that part of the reason for this post is a pat on the back to myself, because I didn't flip out and immediately want to put Judith in the tub for a bath or want to sanitize everything she would come in contact with.  In fact, with her starting to attend Sunday School this past year, both John and I were able to really learn to relax over her touching "community" toys that many other little kids were handling during cold/flu season.

This past Friday, we went to my in-laws' house for a visit.  My father-in-law has a good sized hobby farm, and Judith wanted to go see some of the animals.  My father-in-law walked her around, showing them to her, and she tried petting some of them but couldn't get close enough to actually do it before they wandered off.  We just made sure she washed her hands really well with soap and water before we had lunch, and I could see that she got really dirty while she was with her grandfather, but she also had a lot of fun.  At least she didn't drink stagnant water out of a puddle like she did last year around this time.

I think what makes a lot of CF moms panic, at least initially, is the fact that some of the really nasty bugs our children can culture, like pseudomonas, live in soil and water.  Trust me, it's something that I think about, and is the reason why we get Judith to wash her hands as soon as we can get her to a sink.  But for us, it's not a hill we're going to die on, especially since she loves animals and loves to dig.  So I don't want to keep her away from it, and want her to be able to enjoy something that's a pretty normal part of childhood.  I feel the same way with splash parks/water parks and pools.  Some of the only things we avoid are any bodies of stagnant water and hot tubs.

I also have to laugh at myself a bit, because I'm realizing how much I did put her in a bubble, mostly out of necessity, but there were those small little things that I now realize weren't worth panicking over.  Sure, I still have days when I panic over something silly, and I would think that's normal for a lot of CF moms.  I've been working with myself, though, to try to relax, because once she goes to school she's going to be doing things that I can't control, and is going to be exposed to way more than what I can control as well.  We're certainly still proactive and do what we can to keep her as healthy as possible, but I also am realizing that we're rapidly getting to the age where we're going to have to start letting her get into things and letting certain things go because it is out of our control.

Wednesday, August 6, 2014

Miscellaneous Musings

I kept forgetting to update the blog, because things have been rather busy around here the past few weeks.

Trying to get things regulated for Judith has been... interesting.  I know why we have to keep her on the high doses of miralax, and with her bowel as stretched out as it is, we need to make sure she's taking all of it to keep things moving so we don't end up inpatient again anytime soon.  However, I also knew that it was going to create some nightmare diaper change situations based on her past reactions to 1+ caps of miralax, and I was spot on.  The latest clean out has put a total halt on potty training, even for pee.  I want to try the training underwear to see if that will help her realize when she's wet, but with the poop situation I need something that's going to contain that mess.  I don't even trust to put her in a pull up because they're not absorbent enough.  The good news is we were able to cut her daily amount back to 1 cap a day instead of alternating between 1.5-2 caps a day, so I'm hoping this will help.  I'm also feeling guilty because we're going to run another fecal elastice test to get her pancreatic function numbers since that hasn't been done for more than 2 years, and I haven't collected the specimen yet.  They want it a certain consistency (gross, I know), and I'm honestly not even sure how I would've collected something in the past few weeks.  The good news is that Judith's 2 week follow up x-ray looked good: she's not backed up, and the loops that were really stretched out are showing signs that they're starting to move back to a normal state.

Still no action or news on our house.  The market in our area really slowed down in July, which is apparently typical, so we kind of hit at a bad time.  Things are showing signs of picking up, and we're getting ready to tweak the price to freshen things up, so I really hope this will help get us an offer soon.  John has a little more patience with this than I do right now, which is funny because he's usually the impatient one.  I'm starting to get exhausted looking at properties and trying to find one that both John and I like and that will work for our family.  We did find 2 houses that we really liked, but 1 already sold and I have a feeling the other will sell before we get a chance to submit an offer on it.

We had some gorgeous weather last week, and I really want that back!  For July standards, it was way abnormal: low temperatures and very low humidity.  It felt more like fall than the middle of summer, and considering this happened at the end of the month it completely threw me off, making me think that September was finally here.  Talk about disappointment when I realized that we still have to get through August!  Knock on wood, the entire summer hasn't been crazy hot, and I hope it stays that way.  We've certainly had some hot days, and the humidity levels have been high, but compared to last year, this year has been pretty awesome.  I like not having to run the air conditioners and saving some money on electricity!

Friday, August 1, 2014

Birthday Boy!

Today Buster is 9! He is handling his senior years very well. I'd say he is slowing down with age, but considering this is the pup who takes laziness to a new level, it's impossible to tell if he really is slowing down! He still loves to snuggle, burrow under any and all blankets, and Ned's to know that his Lady is happy. Buster has a soft spot for Judith... when she has food. The rest of the time he tends to ignore her, choosing instead to claim the sunbeam coming in through the windows or to claim the coveted spot on the couch next to me.

One thing that I did notice is that he tends to follow me around the house more than usual. In the past, he was ok being in another room while I was working in another, but now I know to expect my little shadow to make an appearance if I'm gone for more than a few minutes.

Buster certainly has his quirks, but he has his hilarious moments as well, and he helps keep things interesting.

Happy birthday, Buster!

Saturday, July 19, 2014

Tips & Tricks: Hospital Admissions

After going through 3 admissions in as many years (1 NICU admission after birth, and 2 short admissions), I think of things to bring for the next admission and things not to bring for a future admission.  I wanted to share my tips and tricks, with the hope that it might help another mom or dad with their packing list when their child is admitted.  I am by no means an expert, and this list certainly is not exhaustive.  It is a "work in progress," and I'll try to remember to update this often when I discover new things.

Please make sure you talk to your NICU staff about what they permit at the bedside before doing things on your own.  Each NICU typically has it's own set of rules, and some will allow certain things while others will not.  Some things could also depend on your baby's situation.

 * Bring some pictures to put at the bedside: you, your spouse/significant other, any pets, other family members, etc.  Even though baby can't focus on them, it can give the bedside and even the isolette a comforting touch.

* You can bring your own clothes for baby to wear, but it's not a requirement.  If you do bring your own clothes, label EVERYTHING.  Tell the nurses that you want to use your own clothes, and if they don't put a note at the bedside alerting everyone that you're using your own, make a little sign yourself and hang it on the isolette/open crib.  If your clothes are labeled and they accidentally get tossed into the hospital laundry, it'll be easier to track them down.

* Blankets are a great way to spruce up and decorate the bedside.  A clean, soft blanket from home can be used for kangaroo care, and can also be draped over the isolette for a personal touch.

* If you are planning to try to breastfeed, a nursing pillow can help.  One can also help with bottle feeds.  Ask if you can keep your Boppy or My Brest Friend (or whatever your pillow of choice is) at the bedside so you don't have to haul it back and forth.

* Ask for Snappis/breastmilk storage containers as often as you can, even if it's every day.  Get a couple packs at a time if possible.  You go through them fast, especially once your supply is established, and it's a good idea to have plenty of extras around in case you can't make it to the NICU for a day or 2 (or longer).

* Watch what kind of clothing you get.  Avoid zippers, because you can't close them completely or easily around monitor leads.  Snaps are always the best option as it allows for monitor leads to easily come out of the clothes.  Pull over outfits also work well, but ask your NICU team first since some aren't as wild about them.

* Take lots of pictures!  You'll be amazed by how much baby changes in a really short amount of time.  Grab some videos of baby as well.

* Bring some things to do while you sit at the bedside during times when baby can't be held.  Books, portable DVD players, laptops, iPads, scrapbooking supplies, etc. can all help pass the time.

* Pack some snacks and small bottles of water in your bag so you don't have to get them in the cafeteria or from vending machines.  It's much cheaper to bring stuff yourself.

Admissions for a Young Child
I'm sure there is some cross over for admissions for other conditions, but since my experience is CF related, my tips and tricks will reflect more of that than anything.

+ = things to avoid if you are being admitted for a GI clean out; don't have them on or in the bed for sure, but you may still need some of these things to go home at discharge

Things to Bring:
+ Favorite blanket(s) for your child
blanket(s) and/or sheets for you
soft mattress topper for bed chairs/fold down beds/cots
+ pillow(s) for your child
pillow(s) for you
+ pajamas and very comfortable clothes (think sweats, cotton pants and tops, etc)
clothes and pajamas for you
books, puzzle books
+ favorite toy/stuffed animal/doll or 2 for your child
laptop, iPad, or phone (or any combination of these) and chargers for all electronics
entertainment for your child (books, coloring books and crayons, etc)
toiletries (toothbrush, shampoo, deodorant, etc)
combs, brushes, and other hair supplies that you use regularly
money for food
your own vest system (optional; the hospital may have their own machines you can use)

* As noted in the key, really watch what you bring if you're being admitted for a clean out.  Don't keep ANYTHING in the bed that you or your child really cares about, because the odds are incredibly high that said item will be ruined by poop.  You can bring blankets, a favorite stuffed animal/doll/toy, etc, but keep it safe on a shelf away from the bed until you're ready to go home.  Stick with hospital gowns and not your own clothes (including socks if you don't want to have to buy a lot of new ones) for the same reason, since it will get ruined.

* If you're in for a clean out with a really young child who is still in diapers or is potty trained but will be in diapers as a backup, ask for the heavy duty chucks to line the bed instead of the thinner blue chucks/linen chucks that they lay down.  We got big, purple ones to line the bed for our last clean out, and it saved us from changing the linens extra frequently.  You may still have some linen changes, but hopefully not as many.

* Ask your hospital if they have the option for a parent's tray to be brought to the room.  Our hospital offers one for a cheaper fee than what you could end up paying in the cafeteria.  You can also nibble off your child's tray, depending on the diet they're on (that doesn't work as well if they're on clear liquids).

* Don't hesitate to ask the nurses to keep an eye on your child so you can take a walk and get food or just get away from things for a few minutes if you need to.  Even a short-ish walk to the cafeteria to get a meal can help give you a small boost of energy.

* Child life specialists can help during procedures, even for something as "basic" as a blood draw or IV placement.  If your child has a hard time with these things, ask if they can help offer distractions.

* If you're going to be in for a longer stay, bring some things to decorate your room to make it more homey.  I saw a neat tip on another CF blog I read, and the mom decorated her child's IV pole with Christmas lights.  Make paper chains to hang, or have your child draw/color pictures to hang up and display.

* Bring some "cooler weather" clothes for yourself and your child if you or they tend to be cold.  Hospital rooms are often kept colder, and you can adjust the temperature, but bring some capri-length or long pants and maybe a long sleeved top or sweatshirt if you get cold easily.

* Bring enough socks for you and your child, and possibly slippers (that are easily washed) or sandals to walk around.  Everyone has their preferences, but I personally do not go barefoot or allow Judith to go barefoot in a hospital room.  Think about it: those floors are nasty, and hospitals are germ-filled places.  The floors are certainly cleaned, but yeah.  If you're comfortable going barefoot, though, go for it.

* Try to outsource phone calls if you think you'll be constantly bombarded by calls and/or texts.  Have a couple contact people that you can give updates to and let them pass the word on, or let people know you'll post updates on Facebook, Twitter, a blog, through a mass email, etc.  During our first post-NICU admission, it was getting extremely difficult to field phone calls from tons of people on top of changing many diapers, scheduled tests, and discussing things with the doctors and nurses.

* If a spouse/significant other cannot be at the hospital for whatever reason, even for a visit, Skype or Facetime with them.  You and your child can still see and hear them that way, and it can help.  You can always do the same for family and friends if they want to visit, but are unable to.

Friday, July 18, 2014

Our Recent Inpatient Adventure

As you already know, I tend to talk about poop.  Sometimes a lot.  Ah, the life of a CF mom!  So if you're keeping score on poop posts, go ahead and add another tally to that list.

Last wee, I fully admit that our meals weren't always the greatest in the evening.  Well, at least mine weren't.  Judith still had some great meals at VBS at our church.  Even so, she didn't eat anything that typically binds her up and causes her to get really constipated.  Yet by Saturday, she was already going on day 2 of no poop, and by our clinic visit on Monday she was on day 4.  Poop is always something we discuss at clinic because it's one of those things that can tell us how she's doing, and I made sure to mention the lack of poop rather quickly.  We had to do labs anyway, so Dr. G. added a KUB to her x-ray list.

The rest of the visit went relatively well.  Judith was extremely cooperative in the triage room for vitals, and was even telling the nurse everything she had to do (smart kiddo!).  However, she did decide to hide in the cabinet under the sink when Dr. G. came into the room because she kept claiming she didn't "need a checkup."  She's such a stinker like that, and it gave everyone a good chuckle.  We got her cultures, she got 3 stickers and a lollipop, and she was happier... at least for a bit.  Labs are never fun, but at least the lollipop distracted her long enough for us to walk over to the lab.

A half hour, 3 sticks with butterfly needles, and 2 finger sticks later, the phlebotomists got enough to send for testing.  This time, these ladies were slick (unlike others we've had in the past where I was seriously questioning how many peds patients they've stuck), but Judith's veins just did not want to cooperate.  We got what we needed, though.  Then we got her x-rays: lungs are still as clear as always, but we found out the following morning that there was quite a stool load hanging out in her intestines again.  I wasn't really surprised by that considering by Tuesday she was going on day 5 of no poop.

Tuesday morning I called our CF nurse to get the results, and she said that everyone talked it over, and they were willing to prescribe and let us try some fleet enemas at home, or we'd have to bring her to the hospital to do another inpatient flush.  Initially I thought we could try the fleets at home to save us an inpatient stay, but John and I decided to pass on that level of fun, particularly because the house is on the market and neither one of us really had a burning desire to be cleaning feces off the floor (or anywhere else it might hit, for that matter).  So inpatient we went.

Dr. G. ordered a barium enema that we did while we were waiting for a bed to become available, because he wanted to rule out Hirschsprung's.  That scan looked clear, so we know that's not contributing to the overall issue.  We got settled into a room relatively quickly after we finished the barium scans, and then we faced the fun of trying to place an IV.  Last year, it was no problem and the nurses in the ER got it in super fast.  This time was a complete 180.  It took 2 different people and 4 sticks for them to finally get a line placed.  They would've had it on the 3rd shot, but something happened (my MIL was explaining that sometimes the IV can go the whole way through the vein and make it unusable, so I have a feeling that's what happened) and they had to go for a 4th stick.  I have no idea what they would've done if they couldn't get it in that time, but I was thisclose to telling them to give her a break and trying again later that evening.  I also feel a little guilty, because I got sarcastic and snarky with one of the ladies over a passive-aggressive comment she made.  The first lady would only stick her twice, and was getting pissed because Judith would move.  After the 2nd majorly failed attempt, she threw up her hands, declared herself done, looked at me and said, "I wouldn't have a problem if she'd stop moving.  You need to talk to her and MAKE her understand she can't move a muscle!"  I looked at her and said, "Yeah, well, she's 3 so good luck with that."  I don't think she cared for my response too much, but come on.  Judith has to be in the toddler beds yet, and this lady works in a freaking children's hospital so you'd think she'd be used to this kind of thing.

Anyway, the team Judith had decided to take a more conservative approach to start, and tried using fleet enemas and miralax to attack the blockages from the top and bottom.  Judith didn't drink the miralax, which didn't surprise me, and they wanted to try to get her out of there as quickly as possible, so we ended up having to get an NG placed and start Golytely to break things up further.  The barium helped, and the fleets did help break up the spots that were really low, but the golytely was needed for the higher spots.  The nurses started that Wednesday mid-day, and by about 3 or 4 AM Thursday morning, were able to completely stop it.  Overall, we were there almost as long as last time, but once the golytely was started the entire process did move faster.  And knowing what to expect this time helped as well.

Follow up this time is going to be interesting.  Because of the size of the blockages, there is a big part of the colon that is really stretched out and will take a while to go back to normal.  So we're going to have to do monthly x-rays to make sure that things are still moving, and we have her on 2 caps of miralax daily to assist with that.  The GI team that was following her in the hospital said it's likely that we could end up inpatient again sometime soon (like within the next 6 months) to clean things out again as her colon bounces back, but her CF team and I are doing everything we possibly can to avoid having to do that again.

This stay was, emotionally, harder than the previous one.  I was bummed that we were right back to square one from approximately this point last year, and Judith was extremely unhappy because now she really understands what's going on, and remembers more.  I did joke that maybe we should make a standing appointment for sometime within this 1 month block every year to do a clean out since it seems to be Judith's preferred time to back up.  Realistically, though, seeing this happen again in a little less than a year just kind of cemented the fact that Judith's issues, at least right now, are heavily GI related, and that we're going to be challenged by them for a long time.  There's no way to really tell or predict how frequently we'll have to go through this, or if we'll get longer stretches between clean outs, but for now we're focusing on keeping things moving as best as we can and trying to do as much of it at home as a part of her daily maintenance so we can avoid going inpatient too often.

As a small tag here at the end, I have to give a huge shout out not only to our CF team, who is as awesome as always, but to the fantastic doctors and nurses that took care of Judith during her stay.  The doctors were great at taking the time to explain things to us, and her nurses were more than willing to take it a step further and explain things even more if I had questions.  They did a fantastic job with Judith, and that's something I always appreciate!

Happy 5th Gotcha Day!

It's crazy to think that it's already been 5 years since we rescued Buster and Lady, and that both dogs will be 9 very soon!

Both dogs are doing well, and right now are just exhibiting age-related problems.  Lady's arthritis flares up a little more frequently than before, and she's had a few days recently where she's been on restrictions and not able to play as often as she would like.  Buster's pinched nerve acts up occasionally, but a little bracing helps resolve that.

They will constantly "battle" each other, one shoving the other out of the way for the preferred spot on the couch next to me, or the preferred spot in the sun that comes in through the doors and windows.  They really love Judith, and love her even more when she'll drop something during meals and snacks.  Both dogs, but especially Buster, love their blankets, and any blanket is fair game for burrowing.  If you can't find one of the dogs laying in the sun, it's a good bet that they're snuggled in a little blanket nest!

Happy 5th Gotcha Day, Buster & Lady!

Tuesday, July 1, 2014

What We've Been Up To

It's been a crazy last few weeks!  Our house officially went on the market a week ago, and we were able to start the fun part of the process and look at real estate.  It's been crazy busy around here getting things prepped, but the house looks fantastic.  Now I'm at the point where I'm in "maintenance mode," feeling like I live in a museum, but I know it'll be worth it in the end.

Amid all of the chaos, Judith came down with a summer cold, causing her MRSA to flare, and was gracious enough to share her germs with me and my mom.  Her team put her on bactrim right away like they always do, but go figure now she's wised up to the crushed pills in her Pediasure and was fighting us with drinking it.  I'm hoping that in another year or 2, I can start to teach her to swallow pills so she won't have to worry about the nasty taste from the antibiotics.

We've also been using the new vest, and we seriously LOVE it!  Judith now has the independence and control with it that I really think she wanted with the other vest, and even though I still need to help her put hoses back on if she unlocks it mid-treatment, the majority of the time she can handle it herself with minimal help (typically one of us has to support the hose so she can lock it in place).

Making our lives even easier was the arrival of the Raksog cart!  I'm seriously glad that so many people recommended this cart, and that we have a vest system that I know would easily fit into it!  It took some tweaking to get the middle shelf placed at the proper height so I could get the generator in and out of the bottom shelf, but overall the cart was easy to assemble.  I bought 2 plastic "woven" storage baskets at Lowes (a perk, because they're super easy to clean) that fit beautifully in the top shelf, and Judith's meds and neb supplies now reside in those.  Her nebulizer is housed on the middle shelf, along with her vest, and the generator is on the bottom.  The one thing I want to do is try to find some hooks that will hang on the side of the shelves so I can hang the hoses on them.  Currently they're draped over the top of the cart, and that works, but I'm thinking hooks will make things look neater.

Tuesday, June 24, 2014

Big News From Vertex

The Phase 3 results for the Kalydeco/VX-809 combo are in, and the final step is submitting everything for FDA approval!  For the approximate 50% of the CF population that is homozygous F508del (or those that have 2 copies of that mutation), this is HUGE news.  Heck, it's pretty big news for the rest of us as well.

It's going to be a while before the heterozygous F508del studies reach this point, and possibly longer yet before VX-661 gets there, but this is exciting news!  It's not a cure, and we still need to look for a cure.  But this drug has the potential to dramatically improve life expectancy and quality of life in CF patients who can get access to the drug.

Personally, I'm remaining cautiously optimistic.  There are a lot of good things with Kalydeco, and I'm excited to read the phase 3 study results in-depth to see the positives that came out of it.  At the same time, I've also read some of the negatives that are happening, and I really want to know what the long-term effects are going to be.  I'm fully aware that we won't know the long-term effects for a while, but it's still something I can't help but think about.

In any case, it's an exciting day for the CF community, and I'm hopeful that the FDA will expedite the approval process so we can get this into the hands of patients as soon as possible!

Friday, June 13, 2014

So About That New Vest...

I got our call back Wednesday afternoon, and it was shipped out yesterday!  Talk about fast service!  Between the 2 insurance plans, everything will be 100% covered, so we'll have no out of pocket payments.  Insurance was waiting for the final paperwork and whatnot to give approval, so hopefully everything continues to go through smoothly.

The next step is to wait for the call from the respiratory therapist who is a rep for Respirtech so we can set up an appointment for them to come to the house and train us on the machine.  Since we're already using a vest and are familiar with how it works for airway clearance, we had the option to waive the training, but I told the rep that John and I would still like to go through with it so the RT can show us the ins and outs of the new machine.  I'm sure I could easily figure out how to use it by reading the instructions and whatnot, but it's just going to be easier for the RT to show us what to do since my reading time is limited these days.

We're hoping that we can get an appointment set up for the end of next week.  I'm also planning to order the Ikea cart that I linked in a previous post.  I'm going to bite the bullet and pay the $15 in shipping, because if the fuel cost estimates are accurate on mapquest, it's going to cost almost that much for me to drive round trip to the nearest store.  The extra dollar or 2 that I would be saving by driving will go toward saving my sanity because I won't have to worry about driving on the highways around Philly, which can be pure hell.

I'm also keeping my fingers crossed that the novelty of a new vest will stick around for a bit, because Judith's been fighting me during treatment times... again.  I know full moon last night has not helped with anything around here, but even once that has passed each month she's still a nightmare.  At least she's been eating a little more, so I guess that compensates for the constant whining I hear for the entire half hour she's on her vest.  After an hour each day of listening to that awful whining, it's no wonder I'm ready to pull my hair out some nights, and just feel like I want to fast forward to bed time.

Wednesday, June 11, 2014

Vest Machines

Side note: I really want to reply to comments, but for some reason my account isn't letting me comment on anything, including my own blog.  Silly blogger.  I need to figure out what's up, so please don't think I'm ignoring you!  I appreciate the comments, and am definitely reading them!  :)

One thing that I look forward to every few months is the new parent support group for our clinic.  We all have kids ranging from newborns to age 5, and I can't begin to say how awesome it is talking to other parents, IN PERSON, who totally get it and you can exchange tips with!  I enjoy connecting with other CF patients and CF parents via the internet, but there's something about the face-to-face interactions that can make a difference.  It just stinks that the disease carries the risk of cross-contamination from 1 patient to another (hence the 6 ft. rule), because if things were different we'd be able to let our kids play with each other and just talk with someone who knows exactly what they're going through.

Anyway, somehow we got on the topic of vest machines, and while I know there are still plenty of people out there using the SmartVest system, I discovered I was in the minority of the group because everyone else was using the inCourage system.  Everyone had nothing but positive things to say about it, which is awesome!  I have to admit I was a bit jealous that they were all using the system already, because I've been getting exasperated with Electromed.  After some encouragement and more positive feedback, I decided to call and leave a message with our nurse coordinator to talk about switching.

Long story short, she said that there were management changes with Electromed at some point, and she wasn't overly happy with them anymore, either.  This had to have happened at some point within the last 2 years, because when we got our current vest Electromed was the company the clinic definitely preferred.  I told her my concerns, and she said we would definitely get the ball rolling to get a system from Respirtech!  I really think this is going to be a good move for us for many reasons:
1. The last few times I've had to call Electromed to get parts for our SmartVest, they weren't nearly as friendly and helpful as they used to be, and the last time the rep got a little snippy with me over the phone because I must not have been describing our problem adequately enough.  Sorry, but I don't know how else to describe what the generator was doing other than telling you it sounded like the air from the generator was hiccuping halfway through the treatment cycle, which it never did before.

2. The SmartVest just doesn't fit Judith properly.  In 2 years, we've been in the same size vest, and at first I figured it was just because she was still so small and literally just met the height requirement to fit into the SmartVest.  For a while, I've been observing that no matter what I try to do to adjust the fit, something just seemed off with the way it was inflating and fitting on her.  Even getting the new bladder and outer shell didn't make a difference.  SmartVests only come in 8 sizes, and after talking with one of the other moms on Saturday I felt better knowing we weren't the only ones who had problems with the fit.  Respirtech, on the other hand, offers 23 size options for the inCourage system, and that alone made me feel more comfortable about petitioning to get a different unit!

3. The single hose on the SmartVest is certainly a perk, and always will be.  However, when that hose gives you problems with the connection, it's frustrating.  Lately, the hose either seems to get stuck in the connection point of the bladder, or it pops out relatively quickly depending on how Judith moves.  If I don't seal it in hard enough, out it pops, and she gets mad because she can't put it back in herself.  If I get a good seal, then it gets stuck and I have a heck of a time getting it out.  User error?  Possibly.  But the other problem is Judith acts like an ox on her vest sometimes, and will pull that dang 23 lb generator along the floor to get to something she decides she wants, and that always ends in the hose popping out as well.  Could we have the same problem with the inCourage?  It's possible.  The big attraction for me, however, is the locking hoses.  I'll gladly give up the single hose mechanism for a double hose setup when they'll lock into place, and will be easy for her to pop into the vest herself.

4. The older model SmartVest generator is huge.  And loud.  And weighs a ton.  Ok, not a literal ton, but it's 23 lbs.  I know I've complained about this before, and I even expressed my concerns about that to the customer service rep when I called with our generator issue the last time.  Since they had to send us a new generator (and we had to send the old one back so they could inspect it), I asked if we could get one of their newer model generators that is much lighter and quieter.  I was told that nope, they refuse to send me a new model generator, and said that maybe with a new prescription from our doctor they could switch us.  I then asked if they were planning to ever phase out the huge generators and transition everyone over, and she told me no.

The inCourage system's weight is probably going to be closer to the weight of the new SmartVest system, according to what people told me.  So I'd guess somewhere around 16-17 lbs.  That's going to be a huge difference for me.  Obviously I'm still planning to get a cart to store everything on, but for transport purposes having a lighter machine is going to be easier on everyone, including my parents.

5. The other moms were telling me about the ease of programming the inCourage system, and I'm excited about that!  This vest cycles through things itself instead of you having to program and start/stop things on your own, plus the way it inflates and shakes is supposed to clear the airways better.  Judith's been doing so well respiratory-wise, and I want to keep that up while her lung involvement is minimal.  If we can keep clearing things efficiently now, I can hope that we can delay or minimize some of the damage the disease causes as it progresses.

We have no idea what our insurances' response is going to be to this process.  I can guarantee they're going to deny payment at least the first time.  They always do, especially given the costs of the equipment.  I was told that because our current system is about 2 years old, and we also switched our secondary since we had the SmartVest (and they didn't have to make any payments toward the purchase), we should have a little more leverage.  Our nurse coordinator is going to do everything she can to help us, as is Respirtech.  I felt really good after the initial phone call with Respirtech Monday afternoon, and feel very confident that this is a good decision for us.  I'm hoping that the process doesn't take too long, and we can get the new system (and trained on it) quickly.

Friday, June 6, 2014

Imaginative Play, CF Style

Somewhat recently, Judith has really taken off with her imaginative play.  Some of it makes me laugh, because for our house it's a totally normal occurrence, but in other homes it would be a nutritional concern for a typical kid.  For example, literally a few minutes ago, Judith was at the coffee table preparing some "food" for her Bitty Baby (appropriately named Bitty).  She's standing here, ticking off the ingredients, and says, "Now we add the salt!"

Can you tell that salt is a preferred condiment around here?  And she's been getting more of it lately since we've had some warmer and more humid days, so I've been getting back into the habit of making sure she's getting extra doses to replenish what she's losing when she sweats.

Just the other day, I heard her saying something about doing breathing treatments on her doll.  I'm going to work on cleaning out the supply caddy we have, and getting things into baskets for better organization, so I may dig out her old, tiny spacer so she can pretend with that.

Now I'm waiting for her to find her old percussors and want to do manual CPT on her toys.

It's amazing hearing all of this, and realizing how much she's really understanding and picking up on even though we might think she's not quite getting it.  At the same time, it sucks that she even knows what any of this is.

Saturday, May 31, 2014

A Final Thought for the Month

As CF Awareness Month comes to a close, I want to offer a final thought that I feel is important for people to remember.

CF patients may not “look that sick,” but please keep in mind that a ton of work goes into keeping our children (or themselves for adults and older teens) as healthy as they possibly can be.  CF is a progressive disease, and as another CF mom puts it, it’s a “365 days a year, 24 hours a day” thing, and “there’s no remission or vacation from CF.”  Family, friends, loved ones, and the CF care team are in it for the patient so they can have a full life, with as many typical experiences as they can.  So while we do have a month where advocacy and awareness happen more frequently, remember that for those living with the disease and for the families affected by it, awareness and advocacy also happens throughout the year and doesn't end because the calendar flips to June 1.

If you would like to read more about CF or treatments, therapies, and other aspects of the disease that I didn’t touch on throughout the month, please visit www.cff.org and click on any of the categories at the top of the page or on the home page.

Thursday, May 29, 2014

No News Is Good News

Nah, don't panic at the title.  I just meant that not hearing from me means nothing has really changed.  Well, besides the fact that the house is in an elevated state of chaos, but that's to be expected when you're getting things ready to stage.

One of my bigger predicaments at the moment is trying to figure out where I'm going to safely store all of Judith's equipment and meds where they'll be safe and out of sight once the house goes on the market and we have showings/open houses.  Many other CF moms have recommended this Ikea cart for storing Vest equipment, nebulizer and parts, and even meds that don't need refrigeration.  I absolutely love the concept, but am still debating if I want to shell out $15 in shipping so I don't have to drive super long to get one in-store.  That, and I'm not 100% sure that this cart will work with our SmartVest, since most of the people who are using them have Hill-Rom or Respritech vests.  In any case, I know I need to get this vest on wheels at some point, because the generator is so darn HEAVY.  And if it helps with storage, well, that's a definite bonus right now.

I did manage to clean out my closet over the weekend, and almost 6 hours later that sucker looks immaculate.  I haven't gotten rid of a lot of stuff since high school, so some of it was at least 12 years old.  9 trash bags of clothes and about 4 of shoes were donated, and earlier in the week I took a huge bag to the recycling center to donate since I knew the other places wouldn't accept it due to it's condition.  When he saw my closet, John actually said to me, "Is that seriously all you wear?!"  I think he was shocked, because my closet was literally jammed full of stuff, and now there's barely anything in there.  I seriously regret not doing that sooner, because I could've had an awesomely neat closet for the last 7 years!

Next on my list is Judith's room, and I know this is going to be a problem.  Toys will be going into storage, and I'm facing reality that it's time to sell all of her smaller clothes.  Certain things I'm definitely keeping, like all of her smocked and monogrammed outfits, most of her 24m/2T clothes since I can use them on my puppets if I get back into puppet ministry, and all of her preemie/NB clothes since she can use them as doll clothes (and I frankly have too much of an attachment to them to get rid of them anyway), but the rest will be sorted and either sold when we have a yard sale, or donated.  I'm anticipating that Judith is going to be upset by the amount of toys that will need to be stored, but realistically she doesn't play with a lot of them right now anyway, so rotating is going to be good for her... whether she wants to acknowledge that or not!

Kalydeco, VX-809, & VX-661

In January 2012, the CF community was buzzing over the FDA’s expedited approval of the drug that has brought us as close to a cure as we have been: Kalydeco.  For the 4% of the CF population that carries a copy of the G551D mutation, the drug has been a major game changer.  While it’s not the cure that we are still waiting for, the promise that it is showing in the improvement in the quality of life in patients who have been on it is remarkable!

Kalydeco, or Ivacaftor if you use the generic name, is developed by Vertex Pharmaceuticals with significant funding/help from the Cystic Fibrosis Foundation, and they are currently working through various phases of the study process for a combination of Kalydeco and VX-809 or Kalydeco and VX-661.  The drug(s) help to restore CFTR function to the surface of the cell, which means that the flow of salt and other fluids to the lungs is restored, and mucus in the lungs can be thinned (cff.org).  The reason that this is so revolutionary for the disease is because up until this point, treatments only targeted and treated the symptoms.  Kalydeco is the first drug to actually target and treat the underlying cause of CF.

Currently, Kalydeco is approved for patients with a copy of G551D who are age 6 and older.  Studies are underway for patients with a copy of G551D who are ages 2-6, and it is hoped that approval for that age group will happen soon.

VX-809 and VX-661 are not approved by the FDA yet, as they are still going through various phases of the study process.  Phase 3 studies are currently underway for the Kalydeco/VX-809 combination for patients who are homozygous F508del (or those who have 2 copies of that mutation), and Phase 2 studies are underway for heterozygous F508del patients (or those that have 1 copy of that mutation and 1 copy of another mutation).  It is expected that approval for the homozygous F508del patients will happen in the next few years, and there is hope that the heterozygous F508del population will not take too much longer to get approval.  Last time I checked on VX-661, I think I remember reading that it was heading to Phase 2 trials, and was showing more promise than VX-809.  It would target the same populations as VX-809.

The reason VX-809/VX-661 has so many people on edge waiting for the studies to finish and approval to happen is because these drugs target a huge portion of the CF population; approximately 90% or more of the CF population carries at least 1 copy of F508del.  Once VX-809/VX-661 are approved for both the homozygous and heterozygous population, a vast majority of CF patients will hopefully see a dramatic improvement, and have a chance at living a longer, healthier life than they would have without these drugs.

In the first paragraph, I mentioned that the CFF provided a lot of support in various ways through funding, which includes a $75 million investment for Kalydeco alone (cff.org).  This is why so many of us reach out and ask for donations and support for the Great Strides walks!  Because CF is an orphan disease, government funding is practically, if not totally, nonexistent.  Our fundraising efforts as families, friends, and others who care about the disease, is what is funding these studies for our loved ones.  It’s why we’re moving closer to a cure!  $.90 of every $1 raised goes back to the CFF, which in turn goes into the research for treatments like Kalydeco.

The drug doesn’t come without a hefty price tag: 1 year of Kalydeco can cost approximately $300,000.  I’m hearing reports from other CF parents in the US that they are not having to pay a lot out of pocket for the drug and their copays aren’t too bad, but the extremely high costs is a reason why other countries around the world have not yet approved Kalydeco for their patients.  In Australia, for example, they are still fighting the government to approve Kalydeco for patients with a copy of G551D.  My fear is that once VX-809/VX-661 gain FDA approval, patients in countries that are struggling to get Kalydeco are going to be going through additional battles to get the new combination drugs approved, even though a huge portion of the CF population would benefit.

Source: http://www.cff.org/treatments/Therapies/Kalydeco/

Tuesday, May 27, 2014

Various Tests and Procedures

CF patients regularly go through certain tests to get a better idea about what’s going on with their bodies, and sometimes have to go through other tests to get a deeper look into a system:

Throat/Sputum Cultures:  These are done at every clinic visit, and sometimes happen more often if the need arises (i.e. - after finishing a round of TOBI to see if a pseudomonas infection was eradicated).  It tells the CF team what, if anything, is growing in the patient’s lungs.

X-rays:  Patients have annual x-rays done of their chest to check for damage and mucus, and can sometimes need them more often if it’s needed.  They can also x-ray the bowels to check for blockages.

Blood Work:  Like many people without CF, CF patients get annual blood work to check for a host of things, including vitamin levels, blood count, etc.

Pulmonary Function Tests (PFTs):  At a certain age, sometimes as early as 4 or as late as 6 depending on the clinic and child, CF patients perform these tests regularly.  It measures how well the lungs take in and release air, and can also measure how well they move gasses such as oxygen throughout the blood stream (http://www.nlm.nih.gov/medlineplus/ency/article/003853.htm).

Bronchoscopy: Used to get a better look into the lungs, a scope is inserted into the lungs to see what’s going on inside.  A biopsy can also be taken during the procedure if necessary (http://www.nlm.nih.gov/medlineplus/ency/article/003857.htm).

Sometimes other tests are also needed that I have not mentioned in this list.

Sunday, May 25, 2014

Tune Ups and Clean Outs

Sometimes CF patients need additional help to clear up a complication that’s causing big problems, either over time or that pops up suddenly.  Sometimes measures are taken to try to clear up the problem at home, but when that doesn’t work, admission to the hospital happens so other interventions can be implemented.

During “tune ups,” CF patients often go into the hospital for up to 2 weeks for IV antibiotics, and an increased inhaled medication plan to get them back to a place where they have better lung functions and health.  IV medicines are administered through the patient’s PICC line or port, and sometimes patients can finish their course of antibiotics at home.

During a clean out, the patient often needs stronger medicines than what were tried at home to clear a bowel blockage.  An enema like Golytely can be administered through an NG tube, or through the g-tube if the patient has one.  If you remember one of my really long posts from August of 2013, Judith went through an inpatient clean out after developing a large blockage.

Friday, May 23, 2014

TOBI and Cayston

Both TOBI and Cayston are inhaled antibiotics that are used to treat CF patients who are infected with pseudomonas aeruginosa.  Cayston is the newer antibiotic that hit the market back in 2010, and even more recently there was a new form of TOBI released that comes in a podhaler which older CF patients can use instead of nebulizing TOBI.

Some patients who are colonized with pseudomonas or have recurring infections might alternate between TOBI and Cayston to try to eradicate the infections, or may do a plan with just TOBI that could be 1 month on TOBI and 1 month off TOBI, repeating it as necessary.  Like so many other aspects of this disease, that will vary on the individual and the course of action their CF team recommends.

We experienced our first 28 day cycle of TOBI when Judith was 16 months old and she had her first positive pseudomonas culture.  The nebulized treatment took us about 20-25 minutes to complete, twice a day.  You need to do treatments with inhaled antibiotics after airway clearance therapies, because you don’t want them to be coughed out of the lungs.  The whole point is to get them to stay in there and fight the bacteria, so it is crucial to do this as one of the last parts of your treatment time block.

Sources: http://www.cff.org/treatments/Therapies/Respiratory/TOBI/#

Wednesday, May 21, 2014


Mucolytics like Pulmozyme are used by CF patients to thin the mucus in the lungs, and make it easier to cough it out (cff.org).  The CFF website says:
    Pulmozyme acts like “scissors” in the mucus. It cuts up the DNA strands outside the cell that can make CF mucus thick and sticky. This DNA is from the white blood cells that work to fight lung infections. Even if a person with CF has not had a lung infection, the white blood cell DNA is still in the mucus (cff.org).

Like hypertonic saline and albuterol, this is another nebulized medicine that I often hear other CF parents talk about.  Judith is not on it yet (nor is she on hypertonic saline), so our experience with both this and hypertonic saline is limited.

Source: http://www.cff.org/treatments/Therapies/Respiratory/Pulmozyme/#What_does_Pulmozyme_do?

Monday, May 19, 2014

Hypertonic Saline

Many CF patients inhale hypertonic saline during their airway clearance time.  The purpose of the hypertonic saline is to draw more water into the airways to make it easier to cough out the mucus (cff.org).

Source: http://www.cff.org/treatments/Therapies/Respiratory/HypertonicSaline/

Saturday, May 17, 2014


Bronchodilators, like Albuterol, are used by CF patients to help open the airways.  Many patients receive the medicines through their nebulizers, but some may use inhalers instead.  The theory is that by opening the airways, it could help the patient cough up the thick, sticky mucus that needs to be cleared out of the lungs (ncbi.nlm.nih.gov).

Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1305882/pdf/10911817.pdf

Friday, May 16, 2014

It's Chaotic Around Here

I promise I haven't fallen off the face of the earth!  I really hope you've been enjoying my series this month, but I know I've been slacking with other posts.  Within the last 5 days, though, our family has been in the throes of chaos, because we made a pretty big decision Monday evening, and something that was talked about for the last 9 months or so is coming to fruition.

We're going to put our house on the market, and start the search for a new home!

John and I have had a pipe dream of moving into a home with 3 bedrooms and even central air eventually, and into a home that's more central to everything since where we're currently living isn't central at all.  The area we're looking at is going to be much closer to a lot of things for us, and we can cut back on commute times for things like visits to my parents and trips to CF clinic.  We've been in our current home for 7 years, and were thinking about refinancing, but ultimately it's going to be better for us to just sell and purchase something else rather than refinancing and waiting longer to sell.

Of course being in a home for so long means we also have 7 years of stuff accumulated on top of items John had to bring to our house when my father-in-law retired and he and my mother-in-law had to move out of the parsonage.  I knew there was a lot of stuff hanging around everywhere, but now that we're starting to box things up and creating storage space in the basement so we can stage the rest of the house I'm seeing how much there really is.  And it's pretty darn overwhelming.  At least this is forcing us to finally do the big purge of stuff that we'll never use or wear again, and in a way it's also giving me the final nudges I need to break the sentimental ties to Judith's baby stuff because now I just want it out of here so we don't have to worry about it anymore!

Naturally we're stressed, because we're pushing ourselves as much as we can to get things presentable so we can get the house on the market ASAP, but at the same time we're really excited and are antsy to start looking at potential homes.