I have a feeling this will get buried among Judith's birth story posts, but for those of you who are interested, I have an update from today's clinic appointment!
It was our first appointment with Judith's new pulmonologist, and I had good vibes about him from the beginning! He came highly recommended to me from a friend, and I'm so glad we made the switch! He was able to answer my questions as best as he could, and I finally feel like we are getting somewhere!
First things first, and I know this is what most people are looking for: Judith now weighs 16 lbs 15 oz, and is 27" long. She gained about a half a pound in a month, and is back on the charts! She's in the 3% for both length and weight! We'll find out what her head circumference is when we go for her 1 year well baby.
I didn't get to speak with the nutritionist today (she had to leave early), so I don't know when we'll have the green light to transition to whole milk and wean off of the Neosure. I do know that we will have to supplement, and they want to get that going now so we can keep her caloric intake up.
Her chest x-ray from October looks good, they're still culturing/monitoring the bacteria that they know is present (it's not growing, and they don't want to treat it because studies done on treatment of this type of bacteria show that antibiotics don't really help, and they don't want to risk it becoming resistant), and we can try weaning her off of the Zantac. Judith's doc isn't totally sure that she's outgrown the reflux since she still shows signs/symptoms of it, but he did say that if weaning off the Zantac doesn't work he'll switch her to something else to try to control it.
I got some better answers about her genetic screen too. Right now, it would be pointless to repeat the test to try to find the 2nd mutation - we'd get the same results, so we'll have to wait until they expand the panel of mutations before we can retest. Judith definitely does not have a nonsense mutation, and the lab panel showed that some of the proteins are functioning, hence why she is still pancreatic sufficient. We have about 2 more years to go before we can feel more confident that she'll remain that way - pancreatic insufficiency usually turns up sometime in the first 3 years of life. If she does remain sufficient, she will probably have a milder form of the disease, and we'll be able to concentrate on treating the lungs and respiratory system. I'm keeping my fingers crossed that her pancreas continues to function like it should!
The only bad part of the appointment was Judith's cough. When they put her on the antibiotics almost 2 weeks ago, her cough went away, but started to come back this past Sunday. Her doc is putting her on another antibiotic and also prescribed steroid treatment to help her lungs and to try to get rid of the cough. I am so grateful that we started the Synagis when we did - her doc said they haven't seen too many cases here yet, but the season is closing in fast, and the protection will help her. I would be extra nervous about this cough if we hadn't started the Synagis earlier in the month.
I feel so much relief after this appointment! We'll get through the antibiotics - it's possible we could be dealing with all sorts of stuff the whole winter, so all we can do is our best to keep her as healthy as possible, and treat whatever may come up.