Super Baby Faith

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 recently submitted an application and Faith was accepted into the Inspiration Through Art program. You can click on the link to read more about this program but it provides free photo sessions for children with special needs and children fighting serious illnesses. We are so grateful for the opportunity to participate in this program. [...]

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 [...]

Today, we celebrate Faith’s 2nd birthday! Life continues to be challenging and definitely not without struggles, but we are so grateful for our Super Baby Faith. She is such a blessing and we couldn’t love her more! It is hard to believe that next year at this time she will be starting school and getting [...]

  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 loves the water! Click on the link below to watch a video of her at the pool: Faith at the pool

I will be playing catch up on this post and will try to summarize what Faith has been up to. I am super busy these days so I just haven’t had the time to post in awhile. Faith is now 21 months old! Faith is definitely making progress with her motor skills, it is slow [...]