Category: Treatment

Hope for Spring

It has been a rough winter for Faith. Pneumonia, RSV, rhinovirus, coronavirus, and other undetected viruses have sure taken their toll on Miss Faith. We have spent a lot of time in the hospital the past few months. We are truly ready for spring with the hope that it will bring good health for our […]


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 […]


Thankful Thursday

I am happy to share some positive things that have been happening with Faith since my last post! Faith is still struggling with the chorea and her tone but we recently started her on a new medication called Onfi that is calming and slowing her down a bit and seems to be helping her be […]


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 […]


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 […]


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