23 Months

 

Faith went peach picking for the 1st time a few weeks ago. It was a pretty hot day so we went early in the morning and didn’t stay outside long. Faith struggles with body temperature regulation so we knew we had to be cautious but still allow her the experience.

In less than a month, we will be celebrating Faith’s 2nd birthday! Time is passing, but many of our struggles are staying with us. We are looking into other treatment and therapy options to address Faith’s struggles with eating.  We want to exhaust all options and know that we have tried everything we possibly can for Faith to make progress with eating. Faith has been sick a lot this summer so that is concerning to us as well. Thankfully, the last few weeks have been much better. We are hoping that will continue!

The positives…

  • Faith got a new set of conformers this past week. She had the most growth I believe we have ever seen between visits this time around.  The ocularist was able to get much larger conformers into her sockets.
  • The last week or so we have heard some new sounds coming from Faith. Her vocalization is awesome! The other night  she almost sounded like she was babbling a sentence of various sounds. We have never heard her do this before and were very excited!
  • Faith is doing much better managing her secretions with the help of medication. This is making a huge difference for her!  She is not coughing, gagging, and choking hardly at all anymore. She seems to be tolerating her tube feedings much better as a result. Unfortunately, Faith has to come off of the medication for a week after a 3 week period that she is on the medication. We experienced the week off this week and Faith was back to her old struggles and discomfort. So glad we start her back on the medication tomorrow!

Thanks for catching up on Faith’s progress! We ask for your continued prayers for Faith’s development and for patience and wisdom for Mike and I through the daily challenges and decisions.

Keeping the faith,

Bridget