Miracle on Faith Street

It seems that Faith’s little body has finally figured out how to sleep. Some nights are better than others but compared to what we had been dealing with we are feeling relieved. Since Faith got relief from the congestion, she has had a couple of nights that I think we can actually say that she ”slept through the night.” She still is having many nights where she is waking every 2 hours. However, she will usually go back to sleep within 30 minutes to an hour. She also has nights where she won’t fall asleep until 11:00 p.m. or 12:00 a.m. and then will be up the next morning for the day by 5:00 a.m. Last night, she had a stretch that she was awake for almost 2 hours but I’m hoping that was just random. Regardless, sleep has definitely improved. Hopefully, the all-nighters and extreme sleep deprivation are gone forever!

Faith’s results from the PH probe, endoscopy, and biopsies indicate that we won’t have to take extreme measures in terms of treatment for the reflux. The problem now is that we don’t have many other options in terms of treatment. The doctor things that she may also have hypersensitivity in her esophagus which can’t really be treated but can make her pretty miserable. Very frustrating!

We are hoping and praying for improvements in Faith’s development. We have concerns about all areas of Faith’s development. At this time, it is too hard to know what is really going on with Faith. We know that children with the SOX2 mutation tend to have severe delays in many areas so we are trying to be patient but at the same time we are staying on top of things so we aren’t missing anything.

We are enjoying every moment with our Super Baby! Her smile and laugh just continue to make us so happy! Faith is really starting to open her hands and she is even starting to grasp toys for a short amount of time. She loves music and funny sounds! It is amazing how much we love this incredible little girl!! SO, SO thankful for her!!

Thanks so much for your diligence in praying for improvements in Faith’s sleep. Please continue to keep her in your prayers!

Keeping the faith,

Bridget