Day 72

The past two days have been nice with our bald little cherub.  She’s been happy and active and thankfully the mouth sores have subsided.  Mom was home on Thursday and dad was home today.  

Thursday I took Kennedy to create some pottery and today dad took K on a long bike ride and to the park.  We also met with one of K's doctors at Loyola to discuss her care.  Thankfully both days have been uneventful and I have silly pictures to post. 

Moving on to more important things like why we met with a doc to discuss K’s care.  I’m sure some of my blogs have touched on issues we have had with clinic and hospital visits.  Her doctor’s are phenomenal but we’ve had more than a few hiccups along the way with some of the overall operations.  That being said, when we brought our issues to light this past week to Megan (the fabulous Child Life Specialist), the entire team took our concerns seriously.  We received a call from the pediatric floor administrator and also met face-to-face with the director of pediatric hematology, who is also part of Dr. Manera’s team.  I can’t say I’m happy that we faced some of the things we did but I can say I’m happy with the reaction we got.   As with anything in today’s day and age, we have a choice of where we go for Kennedy’s care.  Nothing is perfect but there is something to be said about a team that truly cares and that was seen in their immediate response, and truly felt when Dr. Hemenway took over an hour out of his day to sit down and meet with us about our issues.  I’m sure there will be more bumps over the next 2.5 years but at least we now know someone is listening.