Switching Up Routines

It's always hard for us when we have a major change to our routine, especially a routine that has been in place for a year!  It was our first day without physical therapy services, and I'll be honest: I was nervous about how Judith would react, and I wasn't sure what to do with myself since I was missing out on one of the rare opportunities for face-to-face adult interaction that I get in any given week (pathetic, I know, but such is the way of life during RSV season, especially when you don't have Synagis to back you up).  By 2:30, I was trying to figure out why it felt like the day was dragging, and I remembered it was because we wouldn't have PT today.  To celebrate, Judith decided to take a nap during the time when she was so accustomed to working hard.

We're almost a week into the breathing treatments, and we've had a good stretch of cooperation!  It helps that I discovered the goodness of Mickey Mouse Clubhouse on Disney Jr. every morning - that show is like baby/toddler/preschooler crack, and Judith is hooked after 2 episodes.  As far as kids' shows go, this one is pretty good and doesn't drive me nuts like some of them (::cough cough Barney cough cough::).  It gets us through the majority of the treatment, and I'll take any special distraction we can!  She's also adjusting nicely to the mask.  I know that for many kids, the mask is a huge issue.  However, the more she's using it, the more she's adjusting to it.  I'm always amazed at how quickly she adapts to things, and I attribute a lot of that to everything she's been through in her short life thus far.  Plus it helps that she's used to using her spacer twice a day, every day - that has a mask on it, and Judith knows our key words for her treatment, so I can turn those around and use them during neb treatments!

Granted, I'm typing all of this and painting a glorious picture of this calm, cooperative toddler, and that's not exactly the case.  She has her moments, and today she was extra wiggly during treatment time.  Even so, I'm getting the bulk of the TOBI into her lungs, and that's the important thing.

I feel bad for Buster & Lady.  They're not terrified of the nebulizer, but they certainly don't like it.  The machine is loud, there's vapors in the air, and Judith looks like a little dragon breathing the mist through the mask.  For some odd reason, cords, tubes, and wires freak Buster out, and he's paranoid to jump up or go near an area that he perceives as "obstructed" (realistically, he can easily clear said cord, tube, or wire, but chooses not to unless we coax him... a lot).  Lady has taken to plastering herself against me while I give Judith her treatment - I love the dog, but it's mildly annoying when she does this and sinks into the crevice between cushions on the couch, making it hard for me to move if I need to readjust to Judith's squirming.  I know this is an adjustment for them too, and I'm hoping they adapt, otherwise I'm going to hate to see how they react once Judith can get The Vest.

Donations Are Starting To Roll In!

I can't begin to express how much I appreciate the donations our family team is receiving!  The walk is getting closer, and seeing people starting to donate is giving me warm fuzzies - people care so much about Judith, and want to help kick CF in the butt!  To everyone who has donated so far, I send you a HUGE thank you!


It's been a slow week around here.  Judith is still working on walking up and down the stairs. Going down is getting easier, but the going up part is still a struggle for her.  Her legs are really bent, and I really believe a big part of the problem is that she's so short - she has to stretch a lot to swing her leg onto the step to progress.  Crawling up is definitely less work, but she has to learn to walk up eventually.

And speaking of walking, the "goal" that I've been hoping for (Judith walking by Easter) is looking more and more likely.  She's getting very brave while furniture cruising, and many times this week she let go of whatever she was holding on to.  She walks easily with support, and behind her new Thomas the Tank Engine push/ride toy, but she just needs to get more confidence before she takes steps on her own!  She's tried it here and there, and gets a step or 2 out of it before bending over and crawling.  We're getting close, and that means a whole new element of fun will begin around here.

So... We're starting WHAT?

Today is Tuesday, and that means Judith has her weekly PT session through Early Intervention.  She's doing very well, and I have to say that she's turning into a little overachiever.

So her therapist arrives like normal, and works with her briefly on crawling.  Then he declares that since she's doing so well with her crawling, it's time to start working on going up and down the stairs.

Say what?

I am so not ready for this.

In normal Judith fashion, she decides to do the hardest thing first: going down the stairs backward.  Going up (facing forward, obviously) is normally the easiest part, but go figure it's the one she had trouble with.

I was really hoping she'd be sitting on her own, unsupported, before we moved on to this skill.

Sounds like it's time to start using the baby gates regularly... for Judith instead of the dogs.

EI, PT, and 2 BTs

Hah - a title full of acronyms.  Pretty clever for my brain not functioning well from lack of sleep in the heat last night.  I finally caved around 2 am and got up for an hour.  Judith was up for a feed anyway, then decided it would be appropriate to stay awake for an extra 45 minutes.  She went back to sleep, but was up at the butt crack of dawn.  Lovely.

She was actually fairly pleasant today, and that's a good thing because we had our first physical therapy session through early intervention this afternoon.  Her therapist is great - he explained how to do some easy stretches to help her torticollis (which is very mild, and should clear up in a couple weeks - yay!).  We'll get our full goal plan next week, and I already told John we're sticking with the program for the full course.  Some parents choose to end services early, but I think that's a little silly.  If she was getting therapy as a full term baby with torticollis, I would stop once it's cleared up.  But since we know she's already delayed, and could end up even more delayed in time, I say it can't hurt one bit to give her the services for as long as possible.

The dogs were awesome the entire time today!  I'm so proud of them!  I don't really like to gate them in a room when people are here, but right now it's the only way to keep the chaos to a minimum.  They stayed in our bedroom, where their blankets and collection of assorted rawhide bones are.  Neither one made a peep, and the most noise I heard was Buster jumping off the bed (he makes a nice, meaty thud on the floor whenever he does this).  Now the guilty part: we had some leftover hot dogs from dinner last night, and I actually bribed them to be good - I told them that, if they were good this afternoon and didn't bark like a bunch of crazed maniacs, I would cut up a hot dog in each of their food bowls for dinner.  So guess who got hot dogs in their dinner tonight?  :-)

It's probably a good thing that Lady remained upstairs.  The therapist brought his therapy ball in the house, and I could just picture Lady pushing the giant ball around, playing with it and trying to figure out how to get it in her mouth.  And don't think she wouldn't try either - John had a plastic pumpkin decoration out this past year, and Lady annihilated the thing in about 10 minutes.  All it took was my dad saying, "Oh look.  A pumpkin!" and that was it.

But I'm off track.  We're going to look at therapy balls so we have one here at the house to help Judith.  The therapist recommended getting a real one instead of using a beach ball because if a therapy ball is punctured, it'll merely deflate rather than bursting.  It shouldn't come to that point, but I'd rather be prepared!

We've been winding down from the craziness of the weekend.  Easter services went well, and Judith was good the entire time!  Next on the agenda: preparing for her baptism!

I'd also like to take a moment to mention that we watched the movie "Unstoppable" tonight.  Great movie - I highly recommend it if you haven't watched it already.  Awesome part?  John's best friend was one of the rail consultants/experts that helped keep the big Hollywood folks on track.  Neat, huh?  :-D