Category: Treatment

Happy Summer!

It is officially summer break for Faith. This is the first time in 3.5 years that she doesn’t have a regular full therapy schedule. She is going to get a little bit of a break but we are trying to keep her as engaged and stimulated as possible during her break with various activities as […]


Meeting Merrywood

Faith recently started therapeutic horse back riding. Faith has a standing date with a pony named Merrywood every Thursday evening!   It has been such an incredible experience so far! The team of volunteers that is helping with Faith are all so great! They are really brainstorming and working hard to figure out what is […]


New Findings, New Questions, New Treatment

Faith’s muscle tone has been a concern of ours for quite some time now. It makes her uncomfortable and is affecting her ability to make progress in many areas. Faith has very low tone in her trunk and neck and tends to have increased tone in her extremities. She struggled even as an infant being […]


Decisions…

Faith’s last few doctor appointments have left us with some decisions to make. Decision #1-Tonsils and Adenoids Removal We saw Faith’s geneticist about a month ago and she was concerned with Faith’s baseline breathing and recommended that we schedule a visit with Faith’s ear, nose, and throat (ENT)  doctor. Faith has always been a loud […]


Summer Struggles-Part 2

Unfortunately, since my last post Faith’s struggles continued. The extreme agitation, inconsolable crying, and rough nights left us very helpless, frustrated, and exhausted. I had been talking with neurology every few days trying to figure out what was going on with Faith as they were convinced that muscle tone was the cause of Faith’s discomfort. […]


Summer Struggles

Faith has really been struggling the past few weeks. Nights have been rough and seem to be getting worse each night. Faith is waking and crying A LOT during the night and just seems so miserable and uncomfortable. We have had nights with hours of crying and a miserable little girl. We have had nights […]


Rough Week for SBF

Last week, Faith became a big sister! On the same day, Faith ended up in the ER with a very high temperature and was diagnosed with pneumonia. Luckily, she was able to go home and stay with grandparents as Mike and I were in the hospital with our new baby boy, Graeme. As the week […]


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. […]


Trying to get back to baseline…

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 […]


Home Sweet Home!

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. […]


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