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 times during the day but her nights are much worse. Nights have always been challenging for Faith in terms of sleep and her chorea being worse at night but she had been doing so much better while she was on the diazepam. Of course, besides the horrible coughing episodes and struggle to clear her throat! Darn, side effects! We are thinking that things are worse at night for Faith since she is hooked up overnight for a continuous tube feeding and her stomach muscles are tight along with the rest of the muscles in her body. Her pain seems to be the worst in the middle of the night/ early morning after her feeding has been going for awhile. We have tried stopping her feeding at night and sometimes she does get some relief but not always. The challenge is figuring out how to get all the nutrition she needs in a 24 hour period and still keep her comfortable especially since her rate of intake is already very slow. If we feed her more throughout the day then we risk her being uncomfortable for school and therapy. It is also unsafe for her to do some of her therapies while hooked up due to the risk of aspiration. We are trying to work out a plan to see if we can get Faith some relief and sleep. Unfortunately, it seems that until we can get her more relaxed she is going to struggle with feedings no matter what time of the day she gets them or how we spread them out due to her whole body being so stressed with the increased muscle tone and movement.

We are hoping that if we can get the muscle tone and chorea under control that her nights will improve. It is just heartbreaking to listen to my little girl cry and scream in pain and feel so helpless.  I have not seen her struggle like this in quite awhile and it is very concerning because we don’t know what options we have or what it is going to take to get her feeling better. Faith’s situation is very unique so treatment options are commonly trial and error. What I do know is that things have got to change! Faith deserves to be comfortable and happy! We have an appointment this week with Faith’s movement specialist that manages her chorea. She plans on going in a different direction with Faith’s treatment and we will be discussing it at the appointment. We are not exactly sure what that means yet but we would appreciate prayers for wisdom, knowledge, and guidance for all of us involved in the decision-making process. Most importantly, we would appreciate prayers for comfort for Faith.

Thank you for your continued prayers and support for Faith and our family!

Keeping the faith,

Bridget