We had a follow up appointment with the CF center at Nemour's yesterday for Ayla. The Dr. wanted to ask about how her treatments for pseudomonas are going and give her a "once over" since we are in the middle of our plan for treating this. I told her she does amazing and really gives me no trouble with the amount of stuff this little girl has to endure daily to stay healthy.
Ayla had acquired a cold from starting school, apparently a lot of the kids came home with the same thing. But the good news is she was showing signs of getting over it this morning. So nice to see a cold come and go. The Dr. heard a small crackling in her lungs as she had heard before, she wasn't sure if it was due to the cold or something else.
She explained that at the end of this TOBI cycle she will want Ayla to have a "bronchoscopy"-which I guess is a good thing but I don't like the idea of her being put under for this test.
They were extremely happy with her weight gain...her weight was 37lbs and her height was 40inches. She is in the 50/50 club! Her BMI is 70% and they like it to be above the 50th-so I am really glad about that. Good weight gain in most cases is a sign of overall good health-so it's a major blessing.
So for now we are just going to see them again when we finish TOBI and stay the course.
GI was a "getting to know you" visit for us, this Dr. came from Shands and has worked closely with her Dr.'s at the liver clinic. I feel good about having a local GI physician for her who can co-ordinate a treatment plan with Shands. She has been doing good GI wise- we ordered some labs to check liver enzymes and vitamin levels. Other than that we will see him again in 6 months or so....
It was a long day of appointments and I feel really grateful for the progress Ayla has made....we can only pray the Pseudomonas will be gone and everything will look good when they do her "bronch."
4 months ago