Posts tagged Faith

Stuck…

Faith has been sick for almost 6 weeks now. She has been stuck at this same point for the most part since we brought her home from the hospital. We still cannot completely get her off oxygen. We get her off for a day or so and then have to put her back on. Last […]


Christmas Struggles 2013

FYI-I started writing this post before Faith went into the hospital and just never got a chance to finish it. I picked up where I left off so it has ended up much longer than I had anticipated. Just wanted to write a quick post with a few updates but mostly to wish everyone a […]


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 […]


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 […]


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 […]


Faith makes an appearance on Show-Me St. Louis

Faith appeared on the Window on St. Louis portion of the Show-Me St. Louis TV show on KSDK Newschannel 5 this past week. Faith represented the Delta Gamma Center for Children with Visual Impairments and helped promote the upcoming Run for Sight that will benefit this invaluable organization that supports many families in the St. […]


Roaring with Excitement

Thanks to the Wildwood Area Lion’s Club we will be Chicago bound this summer to attend the International Children’s Anophthalmia/Microphthalmia Network (ICAN) conference. The Lion’s Club presented us with a check at their last meeting to cover travel expenses and registration fees. We are so excited for the opportunity to reconnect with families we met […]


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