Posts tagged Aspiration

Christmas Struggles 2013

FYI-I started writing this post before Faith went into the hospital and just never got a chance to finish it. I picked up where I left off so it has ended up much longer than I had anticipated. Just wanted to write a quick post with a few updates but mostly to wish everyone a […]


Prayers for Faith

As I mentioned in my last post, Faith has been struggling since we weaned her from the diazepam. She has been very restless and agitated. She is barely sleeping at night. She just cries and screams when she is going through these rough episodes of extreme involuntary movement(chorea) and increased muscle tone. Faith has rough […]


Happy 4th Birthday, Super Baby Faith!

As I type this post, I feel so grateful for so much! I thank God for every day with Faith; every smile, every cuddle, every response that indicates understanding. I get emotional as I type this because I know things could be so different. The outcome could have been so much worse many times. I […]


Another Road Trip…

We spent this past week at the Mayo Clinic again. We had a full week of consultations with doctors, follow-up appointments, and tests. It was very overwhelming and draining in many ways but we did got some things sorted out. We started the week off with Faith’s MRI. It went well and the results are […]


Propped up and proud!

Look at that Super Baby!! This past week, Faith put weight on her elbows and propped up with support from her mama! This is so awesome that Faith started doing this. She has quite a way to go with getting the strength that she will need to keep her head up for long periods or […]


SuperBabyFaith Arrives Home Nearly One Month After Birth

SuperBabyFaith is home and we couldn’t be happier to all be back at home together! The past month has been rough, but we are so in love with Faith and know that this whole experience has made us stronger already. Faith had her first appointment with the pediatrician today.  It seems that the oxygen issues […]