Peaceful days

We've been in a bubble these past few weeks, and that's been made possible by Ava's stability on her steroids. Since we maximized the beneifit, and the risks of staying on them are many, we're begining a long, slow taper, which, if all goes as planned, means she'll be finished with steroids the day after she turns one on May 24th. She is not having seizures yet, but it's expected that her seizures could start anytime, since the steroids have an anti-seizure effect, and now we're weaning her off of them.

Her breathing has become more labored at times, and that too is to be expected because of the problems in her brain. Needless to say, we're trying to ride the fine line between hovering over her all day long, and enjoying the peaceful days while we have them. 

We continue to be blessed by family and dear friends who are coming to visit, encourage us and love on sweet Ava Bean. After Grandma Harms left, my dear friend arrived with her daughter, who is Ruby's bosom buddy! and while Matt took advantage of the opportunity to work his tail off, the 7 of us girlies and her baby girl-bun-in-the-oven had a sweet time just being together, cuddling, reading books and playing in the backyard. This evening Kristen left and my parents arrived in time to celebrate my Dad's birthday tomorrow. We're so looking forward to a few more days of family time. Each person who has come to visit has blessed us and in a very important way, borne witness to Ava's precious life. We can't express just how much their visits have meant to us. We also know we're able to fully enjoy this time together because of all the friends who are running errands, making meals and continuing to help us keep our boat afloat. Thank you so very much. You are blessing us tremendously.