Category: Updates from Faith’s Mama

Progress and Pumpkins

Faith is doing much better since my last post. She appears to be much happier and comfortable. The biggest issue we are having right now is her feedings. We have been able to increase her rate for her tube feedings but it is a very slow process in order for her to tolerate the increases. […]


A Whirlwind of a Week

Wow! What a whirlwind it has been since my last post. Faith had an appointment last Tuesday with her GI doctor. The doctor was very concerned with Faith’s extreme agitation during her appointment. She sent us to get an x-ray and ultrasound to rule out intussusception.  The x-ray and ultrasound looked fine so that was […]


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 […]


Happy 4th Birthday, Super Baby Faith!

As I type this post, I feel so grateful for so much! I thank God for every day with Faith; every smile, every cuddle, every response that indicates understanding. I get emotional as I type this because I know things could be so different. The outcome could have been so much worse many times. I […]


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 […]


United Way of Greater St. Louis Shares Faith’s Story

Click on the link below to read the article: https://www.stl.unitedway.org/whowehelp/stories_home/tabid/2727/articleType/ArticleView/articleId/2727/Keeping-the-faith.aspx. My favorite part of the article: “Faith is teaching us important lessons,” said Debbie Chapuis, family support services coordinator of the Delta Gamma Center. “Each smile or giggle from Faith is a reminder that being able to see, talk or walk is less important than […]


Summer Struggles & Decisions

We have spent a bit more time at the hospital this week than we had planned on. Faith has had a lingering cough for about 2 months now. For the most part, she has always struggled with clearing her throat and managing her own saliva. However, she was doing much better for awhile after we […]


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 […]


Chorea

Faith had her appointment at the movement disorder clinic this past week.  The neurologist observed Faith and explained Faith’s movement using the term, “chorea”. According to the NIH, chorea is an abnormal involuntary movement disorder, one of a group of neurological disorders called dyskinesias, which are caused by overactivity of the neurotransmitter dopamine in the […]


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 […]


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