So it has been a while since I posted - sorry! Things have been a little better here at the homefront. While the last time I posted we were pretty down about Lilly's new treatments, as always we have become accustomed to it and have worked it into the routine. She finally finished her antibiotic today and I can say that she is doing better - I haven't heard her cough much in quite a while which is a relief. We have discontinued the Albuterol inhaler for the time being - it never seemed to help much with her cough anyway. We are continuing the Pulmozyne nebulizer though - Dr. Kanga wants to keep that in the routine as a preventative measure. It takes about 8-10 minutes to complete and we administer it right before her chest percussion therapy, so it is not as disruptive as I originally thought. Lilly is pretty good throughout the treatment, although sometimes she becomes very irritated at having her "fish mask" on her face. A picture of it is below (sorry Jeremy - it was the only one I had!)
Since we started the treatments, we have been back to see Dr. Kanga recently and I am happy to report that Lilly is now over 14 pounds - hooray! I was so excited. We switched her enzymes to Creon and she has taken to them quite well. She doesn't have to take as many and they seem to work better for her than the Ultrase ever did. She has chubby little thighs and I love it! Lilly continues to have problems with reflux - ugh - despite the new formula. The Enfamil AR makes a big difference, but it still isn't enough. And as many warned me, while I saw improvement short term, I think she is starting to regress a little. I look forward to the day that I don't have to change her (and myself) several times a day. We don't have to go back to Dr. Kanga until September, when Lilly will be cultured again, so hopefully we will have a good report. I will keep everyone posted!
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