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.