just wanted to check in and say that we've had to hold off on starting the amino (is that spelled right??) acid study that Dr. Morton wants to do. It's a powdered form of two types of amino acids that we'll disolve into her milk and give in her feeding tube. We had hoped to start it last Friday but after another infection at her G-tube site she couldn't handle food for a few days. We're hoping to get it going tomorrow night. We need 5 nights of tx and we have to bag her pee (fun), freeze it, then get it out to Dr. Morton for analysis. I'll let you know what he finds out and what that might mean for Lauren. I'm hoping it means we'll be one step closer to understanding her rare metabolic disorder- and actually confirm that this is her problem at all.
missing catching up w/so many of you. know that i think of you guys throughout our crazy days and hope that you and your kiddos are doing well.
love,
jen & lauren
1 comment:
Jen, you know you are ALWAYS on my mind and in my heart....wishing we could just sit and chat a bit. Praying for you and Lauren, and will wait anxiously to hear/read your next update!
love ya
karen
Post a Comment