February 5 was surgery for a baclofen pump revision. Back to Denver! Dad drove us up and stayed.
That Wednesday, TEAM Ashley pulled together and over 90 people across the US wore purple - her favorite color and also the color for Pediatric Stroke Awareness (CHASA.org). So cool!
Surgery was long - 4.5 hours! Re-opened both incision sites. Changed the Catheter. Flat on her back a total of 6 days!
Twice, we've been ready to go and something has gone wrong.
May I add right here - seeing cerebral spinal fluid leaking from your child's back like a water fountain is a little disconcerting. And regardless of what the NeuroSurgeons may say, see a lump of spinal fluid on your child's back is scary. They may tell me it's safe but I really don't like the idea of spinal leaking from my child and pooling in a pocket.
Ashley has been quite the trooper - frustration to the point of tears only once.
It's been hard on our guys. THe first week we were here, my dad and M2 stayed in Durango. They were there in case we came home while David and Chris were in Chicago on a college trip. When we were obviously not headed home, they went back to Phoenix.
David and Chris were at TIU last weekend for the University's Midnight Classic Soccer event. They had fun. Chris is already making friends! It's so good to know he is going where Christ has called him!
Having Dad and Mike there was It good for David - he wasnt alone in the evenings - and Chris was happy for meals!
Things are not easy. Ever, it seems. But chin up!
Tomorrow we are back into the OR for a procedure - a blood patch. Under light anesthesia they will do a blood patch to hopefully seal her spine. Another day down and then maybe home by Wednesday! Whoot!!!!
Marilyn has been here every step. You can't imagine how humbling it is for someone to tell you that God has called them to be your support. To know they truly believe that God has called them to sit in a hospital, sleep on a couch, eat the same food day after day, night after night is something special. God loves through people.
We've developed a daily schedule. UP. Bible Studies. Straighten room. Breakfast. Reading. Walking. Movies. Art. Laughter. Doctors. Nurses. --- all part of our day!
We look forward to the Pet Visits and tonight the DU Soccer Team is downstairs for an event. We look forward to little things! Coffee from outside the hospital. Food, too. Movie times.
But we really look forward to going home!!!