Today we had Froggy's CF clinic appointment.
Froggy is 27.5 pounds. (Why the neurologist's scale said she was 29lbs, who knows?) and in the 25th percentile for weight and 50th percentile for height. We'd like both to be 50th, but oh well.
We discussed Froggy's gas pains and constipation issues. They took an x-ray and there was virtually no poop, just gas. Yep, she's her father's daughter. We will keep her at the highest dose of Miralax for a while longer. Her body, after the initial constipation in May, is still out of whack, and it can take months of weaning down the laxative before she's back to normal...or normal for her.
After speaking with our WONDERFUL Pediatrician yesterday, she explained that if you try to wean down the miralax too quickly, it can cause issues like gas pain and constipation. She suggested we wean in miniscule incriments.
Our Pulmonologist suggested we come back in a couple weeks to check for other possible intestinal issues, that may not be related to CF. I can't remember what they call it, but she'll drink a nasty solution, then take different x-rays to see how she digests it. Sounds like fun.
No blood was taken, so besides a throat swab, the appointment was easy breezy. We're all in need of a major nap. Maybe Froggy will comply. Yawn.
Tomorrow, I'm speaking at a CF fundraiser in Santa Monica. So wish me luck on getting through a speech about Froggy without crying. Probably not possible. I'll bring tissues.
2 comments:
wonderful that you are speaking. good for you. wishing lots of good luck to froggy. jcn
Don't worry about the tears! If it's a fundraiser, you WANT to let them see you cry. There's no shame in playing the sympathy card when it comes to money for a cure!
You'll do great! You've got great subject matter.
Hope Froggy's tummy is feeling better soon!
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