Thursday, June 27, 2013

Day Out with Thomas

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

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

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

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

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

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

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

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

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

Wednesday, June 19, 2013

2.5 Year Well Visit

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

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

Friday, June 14, 2013

Awkward Encounters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, June 10, 2013

Miscellaneous Musings

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

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

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

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

Monday, June 3, 2013

2.5 Years!

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

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

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

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

* Judith is adjusting well to the new church!

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

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

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

* She is enjoying the rides at Hersheypark.

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

Happy 2.5 years, Judith!