Monday, March 31, 2014

Spring Is Here... Almost

I really want to jump up and down and scream in excitement that spring is finally here, but the sleet and random snowfall that happened yesterday is holding me back a bit.  Nevertheless, temperatures this week are actually supposed to be right around average, and that is making me happy!  I'm ready to open up the windows, get some fresh air in the house, and hopefully put the germy season behind us.

As some of you know, I substitute teach here and there to pick up some extra cash.  I have to say, that before I had a child with CF, I knew to take some additional precautions to help prevent the spread of germs, but didn't notice a lot of other things.  Now?  I notice EVERYTHING.  I had a couple subbing days last week, and knowing all of the crud that's going around, it made me go into overdrive with precautions!  At the same time, I'm realizing that Judith's going to be going to kindergarten in a few years, and I start thinking about all of the things we should look into for a 504 plan.  Being a music teacher, I know that in the general music classroom stuff is shared all of the time.  It never made me think twice before unless there was an accommodation need for a student, but now I think about all of the things we'll need to try to get in place for Judith to help minimize exposure.  Things like requesting a separate set of materials that aren't handled by everyone, requesting sanitizer be used frequently and encouraging good hand hygiene, that sort of stuff.  Of course there are a host of other issues that we'll have to look at as well.  It's pretty overwhelming thinking about that kind of stuff right now, and we're not really that close to having to work on a 504 plan!

I know the other factor that has my mind racing is Judith's next clinic appointment.  We're only a couple weeks out, and I'm finding that I still get nervous for appointments.  It's the unknowns that kill me: is this the appointment where she'll culture pseudomonas again, and on top of the MRSA?  What's the MRSA doing, and has it become resistant to the bactrim?  Did she gain or lose weight?  What else can we try to get her to eat more than 1 bite of anything?  And on, and on, and on.  It's kind of a weird set of emotions.  Every time I go into an appointment or check feeling really good about stuff, something new pops up.  Every time I go in worried that the other shoe is going to drop, things are just fine.  One comfort is I know I'm not alone with this, because there are other CF moms in a group I'm in that have mentioned they have the same feelings, so I actually feel normal with something for once.

Anyway, back to spring.  I am so, so, SO glad that the snow is finally gone!  There are still some isolated piles that look absolutely disgusting hanging around, but not many, and I'd be willing to bet that the weekend's heavy rainfall took care of a lot of that.  We're going to be able to start going to the playgrounds again, and won't be forced to be cooped up in the house as often.  Easter is also coming, and that means egg hunts!  Last year Judith did relatively well at the hunt at my parents' church, and I'm excited to see how she does this year now that she's starting to understand things a little more.  Her Easter/spring shoes for church are ordered and shipped over the weekend, and I need to get her Easter dress from last year out of the closet and check the hem on it to see if it needs to be let down so it's ready for this year.  I'm sure I'm probably more excited about a lot of this than Judith is, but I think this year is going to be a really fun year because of how animated she is most of the time!

Wednesday, March 19, 2014

Eye Exam

Judith's 6 month follow-up was this morning, and despite a massive meltdown heading to the ophthalmologist's office (and in the waiting room... and in the exam room once Dr. O. came in), she did really well.  To be fair, Judith woke up in a cranky mood, which never bodes well for the rest of our day, but she absolutely did not want to have her eyes examined and kept telling me that.  Over and over again, she said, "No!  I don't want to have my eyes examined!  I want to go see Pastor!"  I had promised her that we would stop by the church and she could say hi to our pastor while we dropped something off, but she just wanted to do that instead of going to her appointment.  Then, while we were in the waiting room, she declared that she couldn't do anything because she was hiding (she hid her face behind a High Five magazine first, and later switched to National Geographic) and that she didn't want new glasses.

Once we were back in the exam room and she was able to watch Finding Nemo, she settled down and started asking for the fish to hold.  Dr. O. has some vinyl fish that she puts over one of the light tools, and Judith remembers that those are there and loves to hold them.  She asked Dr. O. for them right away (little stinker), and ended up holding all 3 for the rest of the exam.

Dr. O.'s very pleased with how things are looking!  Judith isn't favoring 1 eye over the other, and her eyes aren't doing anything abnormal.  She was extra impressed that Judith was not only able to name the pictures, but tell her what they were in order from left to right or right to left!

I'm happy that we don't have to go back until Judith's annual exam in 6 months.  Well, at least we don't have to see Dr. O. until then, because I'm sure we'll be in the office to have her glasses readjusted again.  We did that today because the nose pads were out of alignment, but now they're back to where they should be.  I have to say that I'm really glad that we spent the few extra dollars to get the very flexible frames, because it's saving us a lot of trips to the optical area just for frame adjustments!

Tuesday, March 18, 2014

General Updates

Things are still somewhat stagnant here because of the yo-yo-ing weather, but I'm starting to get excited because we actually have huge patches of grass visible, and the snow geese have been migrating north over the last few weeks so we know spring is coming.  It's so nice not to look out the window and see huge piles of white everywhere.  Now if the temperatures would cooperate and get closer to our seasonal average, we'll be in good shape.  I want to be able to open up the windows and start airing out the house!

Trips to the playground are just around the corner.  It's a huge plus, because I know Judith misses it, and getting out of the house will be good for everyone.  She's been begging me to go to Hersheypark almost daily, and I have to explain that the park isn't open yet, and won't be open regularly for a couple months (although Springtime at Hershey is coming up in about a month, and I'm hoping the weather is decent so we can go!).

This winter has been hard on everyone, and I know Judith and I have been butting heads.  Some of it is from being cooped up in the house so much, but a lot of it is the age.  We still have a long way to go before she turns 4, but I often find myself thinking and hoping that she'll turn a corner and some of this attitude will stop.  She is so sassy it's borderline ridiculous!  Everyone talks about the "terrible 2s," but 2 had nothing on 3.  My one brother-in-law joked that Judith should give up sassiness for Lent, and my answer back was, "Well that would certainly make for an awesome 40 days!"

So many things right now are "No," "I can't," or "I don't want to!"  The selective hearing on top of that makes a great recipe for extreme frustration... on my part.  She is constantly pushing her limits, and fighting almost everything.  One thing she isn't fighting as much is her vest, which is a pleasant change.  I have no idea if she's finally starting to understand that treatments are non-negotiable and she has to do them or if it's just because it's such an integral part of our daily routine, but I'll take what I can!  I have to thank Disney Jr. and Sheriff Callie's Wild West as well, because it's a huge motivator for Judith since she wants to wear a vest just like Callie.  Now, if I could only find a sheriff's badge, a pink cowboy hat, and some pink cowboy boots, we'll be in even better shape.

Judith's imagination is really starting to take off, though, and hearing some of the things she comes up with is pretty awesome.  When she's not being a total sassypants, she's entertaining us with her stories.  The other week, I received full instructions on how to ride a carousel horse, and yesterday I was told that hippos "hip."  Sunday, during communion, she made our pastor and one of the communion assistance laugh because she cuddled the wafer to her cheek and said "aww, I love it!"  So she definitely has her adorable moments, even though she drives me up a wall regularly.

Friday, March 7, 2014

Wow, I Never Would've Expected Something Like This!

I've been participating in a group for CF parents on Facebook, and someone posted the link to a page with the top 35 CF blogs.  I looked at it to see if there were any blogs listed that I'm not already following so I could add them to my list, and I was surprised to see that we're listed in the 28th spot!

I know I've been posting sporadically lately, mainly because our routine is rather dull thanks to the weather and being stuck inside so much, but it makes me feel good to know that people are reading and our story and message is getting out there!

Here's the link to the article so you can check out the other blogs listed:  Top 35 CF Blogs

Wednesday, March 5, 2014

Support Judith's Crusaders

We're still looking for donations to our team!  Remember that your donation is tax deductible, and the money raised goes back to the CFF and is then put toward various things, the main one being funding for the studies for the new drugs like VX-809 and 661.