We arrived here in Atlanta around 7:00pm today. All told it took us about fifteen hours with stops here and there to get a bite to eat, nurse Lucy, pick up a few forgotten supplies at a Target, and to get jolt of caffeine at a Starbucks along the way. We left our house last night at around 7:00pm (after discussing last minute lab results with our CHOP doctors – more info later on this) and drove to Richmond,VA where we spent the night in a hotel that I reserved for us on Priceline. We got a great deal on the room, but not so much a great nights sleep thanks in part to Lucy. She refused to sleep in the pack and play, instead she slept on me!
Tomorrow we have a busy day ahead of us. Lucy is scheduled for a resting metabolic rate test first thing in the morning. At eleven we have a two hour consultation with Dr. Schoffner. After that we plan on getting a quick bite to eat and then head over to Scottish Rite Children’s Hospital where Lucy will be admitted for her muscle biopsy which is scheduled for Thursday morning at 8am. I hope that Lucy can tolerate this schedule, she has been a bit “off” these last few days, not really eating well and is very sleepy (home sick already).
We are staying at the new Ronald McDonald house here in Atlanta, it is very impressive. The staff and facilities have been wonderful! It really helps to take some of the stress off of being so far away from home. We are very grateful for this opportunity!
It’s late and Lucy is looking to fall asleep on me again. Please keep us in your thoughts and prayers this week as we are hoping and praying that all of this will give us some insight and hopefully some answers too!