17 Month Update

I am running low on physical and emotional energy right now so this will be a quick update.  We continue to be very sleep deprived and are just trying to get through each day. Faith is averaging a total of 5-6 hours of sleep a day. We are lucky if we can get a 2-3 hour stretch of sleep at a time. The minimal sleep she is getting is not at night.  None of her doctors can figure out how to help us with this struggle.

We saw Faith’s endocrinologist this week and now will be determining next steps on the possible start of growth hormone injections. We are continuing to treat her for the cortisol deficiency as well.

We have very important appointments coming up next week with GI and ENT. We are hoping to work through many concerns with those doctors. Faith’s reflux is much better with the continuous feeds but she still has symptoms. She is also still very congested the majority of the time.

Faith started water therapy this week. It was the positive highlight of my week! She was so calm and content in the water. I feel that it will be a great therapy for her and look forward to watching her progress.

Faith also went to the ocularist this week. It was good to find out that she is making progress. She was ready for a new set of conformers. Progress has been very slow, so this was good news for us!

As soon as we wrap-up all of the upcoming consults, we hope to organize a conference with all of Faith’s doctors. We really need to come up with a plan to improve her quality of life. Mama wants nothing more than to see her SBF happy and content! She deserves the best! We are praying for rest for all of us so that we can be the very best for her!

Happy 17th months to my best girl!!

Keeping the faith,