I wanted to start off this blog by telling a little story about William's nap today. So, after I put him in his crib, I decided it would be a good time to take a nap myself. About 30 minutes into the nap, I hear something over William's video monitor. I have it turned up pretty loud so I hear just about everything: the cat practicing parkour on the hallway walls, the buzzer on the dryer, the air conditioning turning on and off, the ice maker. But this sound was unique. My initial reaction if I hear anything over his monitor is to think he is coughing and needs my help right away to check on him to make sure he is OK. But this time, I looked at the monitor and he was still sound asleep. You know what that sound was I realized? He giggled in his sleep! Something was THAT funny that he laughed while dreaming! It took me by such surprise I just watched the monitor hoping that the dream would cycle back and make him smile, but the next stage of sleep had been obtained. When was the last time you heard something that made you smile? Not the "smile because its the socially acceptable thing to do at the moment", but something that when you're by yourself, with no one looking, and your heart smiles. My heart smiled something FIERCE today through all this heartache and pain of having a child with a terminal illness that robs his ability to smile.
Anyway, my reason for this post:
Although we just got home and settled, I recently purchased our airline tickets, Robert and myself with child in lap, to go to Pittsburgh August 16 through August 20. This appointment is considered his 180 post transplant and we are to meet with all the hot shots. He is going to have all of the testing done that he had completed back in Decmeber of 2014. Here is our appointment itinerary:
Sunday, August 16, 2015: Depart SLC and arrive in Pittsburgh
Monday, August 17, 2015
NDRD CLINIC APPOINTMENT – MONDAY 08/17 08:30 A.M. -- MARIA L. ESCOLAR, M.D., and NDRD TEAM
BRAIN AND LUMBAR SPINE MRI/LUMBAR PUNCTURE/PFT’s – MONDAY 08/17 – 12:30 P.M. ARRIVAL; 01:30 P.M. - SCAN
Tuesday, August 18, 2015
AUDITORY BRAINSTEM RESPONSE EVALUATIONS (ABRs) – TUESDAY, 08/18 – 8:30 A.M.
NERVE CONDUCTION VELOCITIES (NCVs) – TUESDAY, 08/18 - 11:00 A.M. - HODA ABDEL-HAMID, M.D.
Wednesday, August 19, 2015
BMT APPOINTMENT/LABS – DR. PAUL SZABOLCS – WEDNESDAY 08/19 – 10:00 A.M.
VISUAL EVOKED POTENTIALS (VEPs) – WEDNESDAY 08/19 – 10:45 A.M.
OPHTHALMOLOGY– WEDNESDAY 08/19 – 2:00 P.M.
Thursday, August 20, 2015 - GOING HOME