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.

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