Removing Baclofen Pump

Thank you everyone for keeping Lily in your prayers. Her surgery went “without any surprises.” Her surgeon said that after he cleaned up the outer skin he could see the pump had broken through her skin and that he could even read the serial numbers on it. There is no doubt that it had to […]


Emergency Surgery

After a super-fun weekend of celebrations (Sister Charlotte’s 7th and her Grammy’s 70th) the tides changed. Late Sunday the blister on her Baclofen pump ruptured. This was what we feared all along. Since it’s now an open wound and is infected, the doctors said it must come out. She was admitted to Miller Children’s Hospital […]


Thanking the Firemen at Station 59

We all know there are Angels surrounding Lily especially since only 1 in 10,000 survive an event that she had 6 weeks ago yesterday. Angels that we can’t see and then there are Angels that we can see like Bob, Brian, Mike and Chris; crew T59C of San Clemente Fire Station 59. Last Thursday morning […]


From nasal to Gtube

We apologize for the lapse in updates…we have been taking things one day at a time. Lily is currently resting. On Thursday, she had her feeding tube removed from her nose and a new gtube placed in her stomach– a good thing since it was causing her discomfort in her nose and throat and is […]


Sundown Syndrome


Lily rested peacefully last night and remained relatively quiet throughout the day. She has not had an arrhythmia episode in over 24 hours (thank you God!). But honestly I hold my breath and hope I’m not jinxing her by typing this. You see the evenings seem to be the most difficult for Lily. We see […]


We Remain in PICU

Day 15 Today was a busy day for Lily, Monday through Fridays are bustling around here. She had occupational therapy where they sat her up on the edge of her bed and tried to engage her muscles to steady herself. Then she had a soothing session of acupressure/acupressure. Physical therapy then helped us move her […]


Preparing For a Week of Changes

Clearly Lily’s “acute” stage continues to improve with talk of moving her out of PICU to the Neurology Rehabilitation unit (downstairs) early next week. But Lily’s recovery work has just begun. Her days are very busy with physical, occupational and speech therapy. She constantly alternates wrist/hand splints and therapeutic boots to help reduce muscle toning. She […]


A Test of Faith

The last 48 hours have been some of our most challenging yet. It has been a series of ups and downs but one thing is for sure and that is that nothing is for sure. On Saturday Jim and I made our first trip out of the CHOC hospital block and went home for a […]


Baby Steps on the Path to Recovery

Lily continues to amaze us. I hadn’t seen her in over 18 hours when I visited Thursday night. We had spent the day with Lily’s younger sister Charlotte and her Grammy at the county fair celebrating their mutual July 19th birthday. When I told Lily that Charlotte brought her back all the stuffed animals she’d […]


Day 10 in PICU

After a long night of coughing (which by the way is good we like coughing its great for her lungs) mom, dad and Lily had a quieter day. There were visits from doctors, xray technicians, physical therapists, an acupuncturist and one furry four legged friend from the CHOC dog therapy group. Her sister Charlotte was […]