Faith’s Procedure & Life Update

Faith went into the hospital last week for a procedure that involved duct probing. Thank you to everyone who prayed for her. The procedure went well. However, the days following were a bit stressful.  Faith has been under anesthesia before without any issues. This time it seems that she had some significant side effects of the anesthesia. She was excessively sleepy, lethargic, sad, and at times very fussy for 3 days following the procedure. She didn’t have a whole lot of life in her. I think the scariest part was that her muscle tone was very low which is extremely unusual for Faith. She tends to have quite a bit of tension in her body so it was a definitely a sign that things were off. It was also strange that no matter what we did we couldn’t get to her smile or laugh. That was sad for us! :(

We are not sure if a different anesthetic was used than in the past. We are going to do some research to see what we can find out about what exactly was given to her just in case at some point in the future she would have to have anesthesia again.

Fortunately, by the 4th day following the procedure she woke up much more like herself! We were very relieved to have our Super Baby Faith back!!!

During the procedure, the ophthalmologist did an “eye” exam to get a closer look at exactly what was/was not in Faith’s eye sockets. The doctor said for all practical purposes Faith would be considered to have anophthalmia vs. microphthalmia. These words are often interchangeably by people. However,  anophthalmia is a medical term used to describe the absence of the globe and ocular (eye) tissue from the orbit. Where as, Microphthalmia is often used to describe small eyes or eyes that start to develop and then stop developing. In Faith’s case, the SOX2 gene mutation caused her eyes not to develop. Most children with the SOX2 mutation have severe eye anomalies and are considered to have anophthalmia. The name for Faith’s syndrome ( SOX2 Anophthalmia Syndrome) is commonly used to describe the many manifestations that can occur with the SOX2 mutation.  Faith’s sensorineural hearing loss is also associated with SOX2. Hopefully, this helps clarify Faith’s condition for those of you who are curious. In the big scheme of things, the precise terminology doesn’t really matter. The outcome for Faith doesn’t change. Faith is blind.

Faith seems to be back to herself now. Sleeping and feeding are still rough! We are hoping and praying for changes in these areas. Faith is growing very well! She is approximately 17 lbs now. What a big girl! Her ears are even growing. She just got fitted for her 3rd set of ear molds for her hearing aids. Hopefully, we will get the new molds quickly so that we can ensure she is hearing everything! Her vocalization has slowed down and she is demonstrating delays in speech which is obviously concerning to us. We are hoping that proper fitting hearing aids will stay in better and allow for her speech development to improve.

Hope you enjoy Faith and her beautiful smile!!

Keeping the faith,

Bridget