Tuesday, July 24, 2012

CF Clinic

Judith had her quarterly clinic visit today.  Much like most of our visits, there are positives and negatives - as of right now, we're not looking at anything major (pending her throat culture results).

I am so grateful that my mom is able to go with me to these visits when John is unable to!  It helps a lot having an extra set of hands, especially now that Judith is into everything.  We had some fun in the waiting room after her vitals were checked and while we were waiting for an exam room to become available:
Saying "baby" to herself in the mirror.

"Mommy, do you see the baby in this mirror?"

Silly faces

Practicing opening wide for her throat culture

Once we got into the exam room, she started to melt down (something I was hoping we could avoid since she did so well at her 18 month well baby visit) when we put her on the scale to weigh her:

Judith currently weighs 21 lbs.  That means she only gained 4 oz in almost 2 months.  Realistically she could've gained a few more ounces since the pediatrician doesn't use the digital scale for her anymore, but even so the difference wouldn't be that dramatic.

While we were waiting for the nutritionist and Dr. G., Judith entertained herself with the bead toy in the exam room:
She was very serious about her visit today

"Grandma, do you see what I'm doing?!"

The nutritionist came in a few minutes before Dr. G., and I got a chance to talk to her about how things were going since I made the phone call to her a few weeks ago.  I described what her typical meals look like, and we talked about how Judith isn't really interested in eating as much as she is drinking her Pediasure (all of us were concerned about this since her weight gain was so minimal as a result).  Once Dr. G. arrived, we went over all of this info again, and we think that part of the problem is because she's still so backed up with her poop.  We're going to start giving her the miralax every day to see if that can clean out her system.  I also mentioned how there's a sheen to her poops, and the team is concerned about that on top of everything else - it could be a sign that maybe she is becoming pancreatic insufficient, so we're going to test her poop again.  With her track record, it very well may be a normal test, but Dr. G. wants to stay on top of this so we can treat it early if something is developing (which I am pleased about - I'd much rather go this route as well!).

We talked about the increase in coughing that Judith is doing.  Right now we're keeping an eye on it and waiting to see what her cultures come back with.  Dr. G. said that the cough could mean the pseudomonas are growing again, but it could also be triggered by something else, something like an allergy.  We should have her culture results by next week (possibly Friday if things grow quickly), and we'll do some allergy testing when we do her annual blood work.

Probably one of the biggest pieces of news is Judith finally weighs enough that we can order her Vest!  Dr. G. is giving the script to the nurse coordinator so she can get the ball rolling and the order placed!  I am so excited that this is finally able to happen!  It has been a massive struggle trying to do manual CPT on Judith for a long time (lately it's been a nightmare - she tries to get away from me, kick/hit me, etc), and frankly my wrists are starting to bug me because of the repetitive motion involved.  I know that introducing her to her Vest is going to be a new battle, but I'm staying optimistic, hoping that she will adapt to it quickly like she did to the nebulizer.

No comments:

Post a Comment