Just a quick update (for Grandmom!). :) Not much new to report. Waverly continues to do well. She was off of her oxygen all day yesterday! The first time in a long time! We even put her to bed without it for a little while, but went ahead and put her on it when we went to bed since she was going a little too low to go without it by that point. Her belly is still very distended and swollen, and we are trying to talk with doctors and troubleshoot why and what to do for her. We switched her from Miralax to Milk of Magnesia to see if that helped (Miralax can be rough on the gut), and increased her Zantac to 1.5mL three times/day. We are looking into other types of formula as well but haven't switched anything yet. The Physical Therapist also mentioned kinesio taping her belly across it in an "x" pattern to help it stay in if it's a low muscle tone problem. In the meantime, we are on the list to be called if anyone calls in to cancel an appointment with the GI doctor so we can get her seen soon. If not, it will be late next week.
We also got word that she was approved for the Tech Waiver, which is great news! It means that we will be able to get some assistive technology equipment and home modifications for Waverly if and when we need them. Other coverage remains the same though. We also may get a little increase in nursing hours.
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