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.