Posts tagged Medication

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 […]


Back to School

Faith is back to school and doing great! She just started her second year of pre-school. Her daily notes from her teachers and therapists have been so positive and encouraging. Faith is definitely making progress! Faith seems to be understanding more and showing a response more often to what is going on around her. I […]


ICAN Conference 2013

We are back from Chicago! I wanted to write a post ASAP so things would be fresh on my mind. Also, I have had so many people ask me already how the conference and trip overall went that I wanted to follow-up with everyone. The short answer is: GREAT!!! First off, Faith had an incredible […]


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 […]


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 […]


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 […]


Fall Fun

Finally, I got a chance to post a few pictures from Faith’s birthday! Hope you enjoy the smiles! 🙂 Faith is continuing to do very well at school. It is hard to believe that she has already been in school for 2 months. Time is flying! Thankfully, with the exception of a sinus infection Faith […]


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. […]


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