Posts tagged Appointment

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 […]


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 […]


Decisions…

Faith’s last few doctor appointments have left us with some decisions to make. Decision #1-Tonsils and Adenoids Removal We saw Faith’s geneticist about a month ago and she was concerned with Faith’s baseline breathing and recommended that we schedule a visit with Faith’s ear, nose, and throat (ENT)  doctor. Faith has always been a loud […]


Keeping the faith…

So far October has not been the most encouraging month. We have had several follow-up appointments with specialists and further testing to dig deeper into Faith’s feeding issues. Faith had her follow-up appointment with her endocrinologist and not surprisingly she has really not gained any weight in six months. We have a phenomenal dietitian that […]


Renewed Hope

We had another busy week of doctor and therapy appointments. We met with several new doctors this week. While we were waiting to get into the new GI doctor, we tried Faith on continuous feedings which I mentioned in our last post. This proved to be a good decision for us. It seems that for […]


Our True Love

We just love our little sweetheart more and more every day! Faith appears to be growing well! We are very anxious for her appointment with the dietitian tomorrow to find out how much weight she has gained. She is looking much healthier! It is February which means Faith will be 5 months old very soon. […]


2 Month Doctor Visit

Faith went to the doctor today for her 2 month visit. She did an excellent job with her shots! She only gained an ounce since her last appointment about a week and a half ago. She currently weighs 8 lbs. 11 ounces which puts her in the 5% for her age. She is still a […]


Sweet Sound

Today, Mike and I took Faith to her appointment with the audiologist. To sum it all up, the sweet sound of the audiologist telling me that my baby girl can hear me was incredible! Going into this appointment we had no idea the extent of Faith’s hearing loss. Of course, it would have been wonderful […]


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