Posts tagged Muscle Tone

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 […]


Spring Update

It is hard to believe that Faith’s first year of school is almost over! It seems like I just posted her first day of school pictures and now it is May and Faith’s regular school year ends this week! Faith had a great transition to school and has done very well. Faith will attend a […]


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 […]


Technology Integration for Faith

This summer, Faith’s early intervention vision teacher started working with her using an iPad. Faith did really well with it so I started seeking out resources that might help us to get one for her. We applied and Faith was recently awarded an iPad through the Lighthouse for the Blind Continuing Education Program. We are […]


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 […]


Making progress…

Faith has been doing really well this past month. She seems so much happier, healthier, and just more comfortable in general. The only real change that we made was starting her on Baclofen. This medication is used to reduce muscle tone. Not sure if it just a coincidence, but it really seems to be helping […]


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. […]


Faith’s Procedure & Life Update

Faith went into the hospital last week for a procedure that involved duct probing. Thank you to everyone who prayed for her. The procedure went well. However, the days following were a bit stressful.  Faith has been under anesthesia before without any issues. This time it seems that she had some significant side effects of […]