Time to Think About Moving to Rehab

Lily’s heart has remained stable and she continues to heal from her ICD surgery –we hope to be able to resume therapy with her left shoulder in another couple weeks. We continue to wait for the results of her genetic test for CPVT, we should know in another couple weeks. The results wont change any […]


Miracle MRI

Sorry we didn’t post yesterday. I know everyone is anxious to hear how Lily’s surgery went yesterday morning. According to her cardiologist everything went “smooth”. They were able to successfully implant and test the ICD. Her procedure took about 2.5 hours. She is still experiencing pain from the procedure and we are trying to keep […]


Preparing for ICD Surgery

Lily continues the daily routine of rehab and rest. We walk a fine line of challenging her in rehab without causing her heart any distress. Although she is on medications to control her arrhythmia she continues to have sporadic breakthroughs. A few days ago She went for a stroll outside for the first time. She […]


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 […]