Wednesday, April 23, 2014

Easter 2014

As much as I love Christmas, Easter is hands down my favorite festival of the church year.  It's been a few years since I've been able to go to services for the entire 3 days and then Easter Sunday, and it's going to be a few more until Judith's old enough to sit quietly through them, but I can't wait to get back into the swing of going.

Our services were absolutely fantastic: our pastor had a really, really good sermon, and the music was really good as well.  Being raised in a high Lutheran church, it was really refreshing to have the high liturgy again!  Judith was on her best behavior (something I always celebrate because some weeks it's really dicey) and didn't create a huge ruckus.

Christ is risen, He is risen indeed!  Alleluia!

Tuesday, April 22, 2014

Culture Results

I figured that there wasn't anything new growing since it's been a week with no alert, and Judith's latest culture results confirmed that.  She's still growing her usual MRSA, but that's it.  So while we want the MRSA to at least turn into MSSA, or better yet, completely disappear, that's not a bad culture overall and it could be more stressful for us.  At this point, I'm so used to the MRSA being present that it doesn't phase me anymore, and Judith's not symptomatic unless she's sick, so I'm not as concerned as I would be if she was constantly symptomatic and in need of a strong eradication plan.

Tuesday, April 15, 2014

CF Clinic

Yesterday was Judith's quarterly visit to the CF clinic.  Earlier in the month, I posted about how frustrated we are with Judith's eating habits, and we knew that this appointment could end up being longer because we needed to talk with the dietician and Dr. G. about what we could do and try to get Judith to eat more than 3 bites at a time.

John was able to go with us this time, and Judith was thrilled to have him with her all day for a change!  There was the added bonus of having his iPad to help distract her.

Don't be fooled by this photo, though, because the vast majority of the visit looked more like this:

At least she didn't disappoint and reacted exactly the way we figured she'd react since she does the same exact thing at every appointment.  And yes, she's grabbing the canopy of the stroller to pull it down as far as she could so she could "hide" from everyone.  She never did that before, and frankly I thought it was kind of hilarious because she's still in the mindset that if she can't see anyone else, we can't see her, either, even though we clearly can.

Anyway, normally Judith cooperates really well for the full vitals and with following the contact precautions that we need to take, but she was only cooperative for about half of the vitals, and was absolutely angry at the world because we dared make her wear a mask as soon as we got into the office.  Trying to get a weight and measure her height was interesting.  I realized that she's been getting taller, and thought she might have been in a bit of a growth spurt because I noticed her pants are getting a little short (especially 24 month sizes).  She's 37 1/3" tall, so no wonder her pants weren't fitting as well in length anymore!  She did only gain a little more than a pound since her last visit, and weighed in at 29 lbs 5 oz.  She's been averaging about 2 lbs every 3 months, but this time the gains weren't as good.  Even so, she's still gaining and her team is happy with that.  I'm figuring that by our next appointment she'll be 30 lbs or more, but at the same time I'm glad that I didn't buy 3T shorts for her for this summer because they would still be way too big in the waist.

After the height and weight check, Judith planted herself in her stroller and refused to move out of it until the appointment was over and we got out to the car.  So the nurse took her vitals in there, and this was the one part that she didn't fuss through:

The pulse ox still fascinates her

Holding her arm nice and still, just like the toys in Doc McStuffin's clinic do!

One thing I asked Dr. G. about was trying to rule out something else that could be underlying and causing Judith to not want to eat.  We went over a whole host of things, from trying to figure out if her reflux was back or if she was developing another bowel blockage, etc.  We talked about her poops to make sure she wasn't starting to go pancreatic insufficient (we doubt she is), and he asked if she had any problems chewing or with textures.  He did his regular exam, and everything checked out: lungs are clear, her ears are clear, and her belly was really soft.  We are starting her on some Zyrtec for allergies, though, because she's been sneezing up a storm the last few weeks (as have I), and we're going to see if that helps make a difference, then do some allergy testing when we do her annual labs in the fall.  So despite a DEFCON 3 meltdown, she had a really, really good appointment!

Our dietician went over some additional strategies with us to try, and she suggested trying the things outlined in one of the packets she sent us a few weeks ago.  None of the team members felt that feeding therapy was necessary at this point, and they don't want to try an appetite stimulant either because they don't feel it's necessary.

The only thing I was a bit disappointed about was our dietician saying that we might have a hard time getting the new vitamins approved by our insurance.  Judith's been taking Aquadeks, but within the last year or so they changed the formulation and now it smells absolutely horrible.  Judith had tasted the new formulation, and decided right away that it was not going to be taken.  I can't say that I blame her, because even the team thought the smell was horrendous when I brought the one bottle in for them to check just to make sure it wasn't spoiled!  Anyway, our dietician sent us a sample bottle of the new vitamin that was recently released, but a lot of insurances are still working out the payment details and whatnot, so it may not be approved by them for a while.  I don't want to have to pay out of pocket for the vitamins when we have others that are covered by our insurance, but for the time being I'm seriously considering it because Judith will actually take these.

Since she had a really good appointment (minus the meltdown), we stopped at Chocolate World so she could "see the cows" on the ride.  We had to get her Hersheypark season pass picture taken anyway, and since we were in the area it worked out really well.

Wednesday, April 2, 2014

Feeding Frustrations

Sign number 2 that I can tell our next clinic appointment is around the corner: Judith is barely eating again.  This seems to be a pattern, and she'll be a rock star for a few days to a week after clinic, then go right back to battling us at mealtime.

I called our dietician to see if she had any new/additional suggestions for us, and the appetite stimulant came up again.  We may be adding that to Judith's daily meds, but it looks more likely that we're going to try to get her into feeding therapy to see if we can get her to eat.  I'm not noticing any oral sensory issues, since Judith doesn't gag, and she doesn't pocket stuff in her cheeks like a chipmunk; she just flat out refuses to eat the majority of the time, and when she does eat more than 1-3 bites of anything it's usually from a selection of up to 5 foods, most of which are empty calories.

Yes, I realize that she's 3, and 3 year olds are notoriously finicky, choosing to eat 5 or less foods at any given time.  Yes, I realize that the overwhelming majority of parents with 3 year olds have food battles regularly.  Yes, I realize she's trying to exert her independence and test her boundaries.  Yes, I also realize that food is 1 thing that she feels like she can actually control in her life, and she's going to fight if we try to "question" that control.  The real frustration is her caloric needs, and the fact that her BMI is nowhere close to the ideal for a CF patient.  At her last appointment, it was about 15% when it really should be at least 50% to maintain optimum lung health.  Judith's respiratory issues right now are minimal, which is fantastic, but if she can't get her weight up (ideally with reserves so she can "afford" the losses that could happen when she's sick) this has the potential to cause a lot of problems in the future as things do progress.  How soon impacts could and would be felt isn't necessarily something we can pinpoint, but based off statistics and studies we know this is a very, very real possibility.

As for those empty calories, people who know about her CF and the dietary needs have asked things like, "Well, why not let her just eat it if that's what she'll eat?"  I'm certainly more lax with that kind of stuff, but we also still have to be careful because CFRD (CF Related Diabetes) is very real, we don't want her to have a ton of cavities (especially if she inherited John's bad teeth), and she still needs to eat nutritious foods so she can get vitamins and whatnot.

Our dietician's going to talk to Dr. G. again about our conversation, and they're going to look things over and make further suggestions/arrangements at our upcoming appointment.  I'm a bit annoyed that our service coordinator for early intervention didn't take me a little more seriously when I asked for an eval/resources for feeding therapy, and kept passing the buck back to clinic, declaring they can just deal with it, because now I'm wondering if we couldn't have started nipping some of this in the bud sooner.  It's not like we can go back to EI at this point anyway now that Judith "aged out" of the system.  Any services we get would likely have to be private, unless she would somehow qualify for services through the IU (which I doubt she would).

There isn't a magical solution to any of this, even though I wish there was, but hopefully some intervention will help.  I'm starting to get nervous that if feeding therapy and/or an appetite stimulant don't do the trick, the team is going to start talking about a g-tube.

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.