Posts tagged Tube Feedings

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 […]


A New Year…

We are hoping that 2012 will bring progress and resolution to many things for Faith! Faith is still struggling with reflux and gas issues that can make her very miserable at times. We are still trying to get her back to handling the rate we were at with her tube feedings before she got sick. […]


September Out and Abouts

I am happy to report that Faith has been healthy the last few months!! We are hoping this pattern will continue throughout the fall! Faith has lost some weight so we are working hard to get her weight back up. We had to increase the volume of her tube feedings since she is still not […]


23 Months

  Faith went peach picking for the 1st time a few weeks ago. It was a pretty hot day so we went early in the morning and didn’t stay outside long. Faith struggles with body temperature regulation so we knew we had to be cautious but still allow her the experience. In less than a […]


What a Big Girl!!

Faith just transitioned to her big girl car seat! She is looking very healthy in this photo! We are so thankful for Faith’s growth! She is still in the less than 3 percentile for her age, but for her height and weight she is in a healthy range. Sorry, for the delay since my last […]


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 […]


Life is busy!

Just wanted to write a quick post to update everyone since it has been a while since I last posted. Life is busy! Mama is back at work teaching some summer classes so Faith is spending lots of time with her grandparents.  As you can see in the picture, Faith and Trinity are getting along […]