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!!
4 comments:
So glad to hear some progress. One day soon this will all be part of the past that makes you all the stronger.
Thanks for the update - had been wondering if there had been any progress in figuring out how to help your little trooper! Sweet girl... praying for answers soon!
I finally got caught up on your blog...I must admit, I am more anxious about catching up with you IN PERSON!!!!
Glad LA is handling the medication. Praying you guys can get her in a lot sooner. Cute pic of our sweetheart! Appreciate the update!
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