The Wheels on the Bus…

What’s a bus doing in front of our house in the middle of summer?  Why it came to pick the kids up to go to the High School to visit Helen.  Let me explain… In addition to Lucy’s wish to see “pincess’ and pops” she also desired to ride a school bus…some day. In her words, every time she sees a bus she says, “Mommy…I want go on dadt… some day.”  My response is always, “Sure Lucy!”,...

The View From Here...

Lucy is currently being transfused packed red blood cells.  Our hope and prayer is that this will help her body function more optimally.  Dr. R is never quick to transfuse, but after seeing our girl on Friday he said we need to do it. It has actually been a quiet and peaceful afternoon.  Sad but true, I am finding some peace amongst the chaos.  Oh how abnormal our normal...

How are things…

Well, let me tell you…It has not been a carefree summer by any means.  Things with Lucy are stressful at the moment.  She is experiencing what Dr. R describes as an autonomic storm.  We have seen this in her before, with each episode we see similarities but the presentation is different as is the outcome.  Lucy’s heart rate, blood pressure, body temperature, balance, over all coloring-she...

Our Make-A-Wish Memories

Make photo slide shows at www.OneTrueMedia....

June…

It’s been so long since I last posted that I can title this post the month of June.  I originally set out to write a post about the UMDF’s annual mitochondrial medicine symposium that took place in Chicago two weeks ago, I am still working on that one, in the meantime I feel the need to catch you up on all of the other happenings in our life. In an effort to just get it all out of my head, I...