Lillie has responded well to the blood pressure medd they put her on! They've been monitoring her vitals for the past several weeks, and despite the weekly increase in her meds, she's continued to have healthy levels, both in pulse and blood pressure.
Last week I told Dr. Taugiq (Peds GI doc) that I was uncomfortable upping her dose as Chad and I didn't feel it was necessary - he agreed. So, she'll remain on 1ml 2x daily unless her symptoms return.
We got our appt with the Geneticist but it wasn't scheduled till May. I believe in my gut that this is the place we're going to get our answers, and was very disappointed to find we'd have to wait so long (not to mention, she'd have to remain on the blood pressure meds until that point. Reeeeaaally don't like that!!). Dr. Taugiq is going to try to pull some strings and get us in much sooner, so please, if you think of Lillie, pray that a window will open and we can see the Geneticists soon.
Overall, we're really pleased with how she's doing! Thanks to those of you have faithfully kept her in your prayers!!