Sarah's Journey to Wellness: March 2017

The good news is that since I haven't written, things have been pretty much status quo. We passed the 3-year mark on infusions back in November for Sarah. That is 3 years without an ER visit, hospitalization, and minimal medication. These infusions have been life-altering for us. We actually get to go to the doctor for checkups instead of several times a week for illness.

Over the past two years, Sarah has had an increase in trouble breathing while at school. At home, on the soccer field, running a 5k, and anywhere else, she has been totally fine. At school, she has been needing her inhaler 1-2 times per day, often during or immediately following lunch. In December, at her follow up with the immunologist, we brought this up. We put her on reflux medication to see if this was the cause, though I wasn't convinced since the problem only presents at school. After a month on reflux meds with no improvement, we went back for another followup. At that point, we started tracking Sarah's peak flow while at school and at home. Over the next two weeks, we found that her peak flow was significantly lower at school than home. When she would take her inhaler at school, her peak flow would increase by 40-50%. That is HUGELY significant. At that point, we put her back on a daily inhaler, which she has been off for almost 3 years. We are only planning to keep her on it until the end of school since she doesn't have issues anywhere else, but since starting it, her peak flow has been consistent at home and school. We still do not know what is causing the trouble at school. It may be something as simple as a reaction to a new cleaning product. It could be as complex as mold. But for now, we have found a solution that seems to be working. This is her last year at that school.

Here are some random pictures.

Time at Gulf Shores, AL last summer