"We Walk By Faith, Not By Sight" 2 Corinthians 5:7
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. [...]
The last few weeks have been pretty rough for Faith. We have had two long ER visits and a hospital admission. About two weeks ago, Faith started with a stomach virus that took its toll on her little body. She had severe vomiting which resulted in her needing IV fluids. We just couldn’t get enough [...]
We are very happy to have Faith back home tonight sleeping in her own crib! Faith’s time at Ranken Jordan Pediatric Specialty Hospital helped us to work through some of our concerns with Faith’s nutrition and weight, oral feeding, and overall development. Faith started a new, higher calorie formula that she is tolerating very well. [...]
Faith has been in the pediatric specialty hospital since Monday. Things are going pretty well. She has adjusted really well and has been working so hard. We are trying many new things in many areas. We are trying a new, higher calorie formula and have made a few changes with her feeding schedule. She is [...]
Faith’s last two weigh-ins have been rather discouraging. She is just not gaining weight despite everything we are trying. Today, she actually lost weight. Not a horrible loss (about 100 grams), but still a loss. This just makes no sense to me or Faith’s dietitian for that matter. Over the last three weeks, we have [...]
So far October has not been the most encouraging month. We have had several follow-up appointments with specialists and further testing to dig deeper into Faith’s feeding issues. Faith had her follow-up appointment with her endocrinologist and not surprisingly she has really not gained any weight in six months. We have a phenomenal dietitian that [...]
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 [...]
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 [...]
We attended the International Children’s Anophthalmia/Micropthalmia Network (ican) conference this past weekend in Boston, MA. This was Faith’s first time flying and she did an awesome job. We got very lucky and she slept on both flights! We started off our time in Boston by participating in the multidisciplinary clinic at Tufts Floating Hospital for [...]
Faith has pneumonia, AGAIN! This is the 4th time in her 19 months of life. We ended up in the ER Saturday when Faith had a fever in the 104 degree range. It was kinda weird because she wasn’t really symptomatic besides just seeming very lethargic and warm. She does have a bit of a [...]
