Super Baby Faith

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. She gained about 2/3 of a pound during her hospital stay. This is very reassuring considering that she was doing extra therapy and probably burning slightly more calories than usual. We feel that through different positioning techniques and observation of her sleep patterns at night we were able to make some progress with her being more comfortable at night. Time will tell now that she is home if her nights will continue to improve. We are trying to duplicate the positioning techniques that were used in the crib at the hospital. Faith’s sleep issues are definitely resulting from her brain abnormalities but with her sleep medicine and positioning that reduces reflux and other GI issues Faith seems to be doing better. It seems that after trying so many different positioning ideas for so long we have finally found something that will work! Let’s hope at least! We will see how the next few nights go! Faith also started back on Prevacid. Even though it has never seemed to help her, the doctors recommended we put her back on it since she has a G-button. We agreed to try it again and will see how it goes.

Faith will be continuing intensive therapy on an outpatient basis probably until the end of the year. Her sessions include occupational therapy, physical therapy, and speech therapy. So, approximately about 6 more weeks is the plan as of now. She will also  be continuing her therapies through the state early intervention program which includes her vision and hearing services. Right now, we are really working on sensory integration, oral feeding, and physical development. I really feel that if Faith can make some progress with her physical development that oral feeding will improve as well. We are continuing to strengthen her muscles and help her learn to manage her tone issues. It is also vital that Faith continues to gain weight for her overall growth and development.

We have a long road ahead with everything! There are no quick fixes. Faith is on her own timeline and only God knows what the future holds for Faith. We just want to ensure that we are doing everything we can to help Faith reach her full potential. Faith is working very hard as always and seems to want to do so much more than she is physically able to do. We hope that we can help her get to the point that she can use up more of that energy! I feel that I have learned some new things that I can work on with Faith as well through observing and participating in her therapy sessions with her.  I think getting full nights of sleep gave my brain a chance to rejuvenate and gave me the chance to take in new ideas. I always have plenty to learn and fortunately have so many great therapists to learn from in both home and hospital therapies!

Thanks for keeping Faith in your thoughts and prayers over the past 2 weeks! We were very fortunate that things went well and that Faith is now back home. Many families spend months in this type of hospital setting so we know that despite Faith’s challenges things could be a lot tougher. For now, we ask you to pray for continued weight gain and improvements in development for Faith.

Keeping the faith,

Bridget