Today was a day of mixed emotions. Charlotte started first grade today and Lily wasn’t with her friends starting fourth grade. Taking Charlotte to school was extremely tough, I’ve been anticipating this day for weeks. I kept it together for Charlotte; she was so excited to return to school, so excited to have Mrs. Levinson […]
08-26-2012
Ups and Downs
This has been a week of adjustments, for all of us. New surroundings, new doctors, new nurses, new schedules, etc. Lily has had her ups and downs. First it was weening her off some medications because they felt she was too sedated, but maybe that was too aggressive because she went to the other extreme. […]
08-24-2012
Millers West
Lily has had a busy week at her new home at Miller West. I had the opportunity to spend some time with everyone yesterday and get a feel for what the new chapter in Lils recovery is going to look like. After a call for visitors you all responded and that is exactly what we […]
08-15-2012
Looking at Millers Children Hospital
Today Jim and are going to visit the Acute Rehab facility at Miller Children Hospital in Long Beach. Yesterday we visited HealthBridge in Orange. We liked the concept of a house-setting opposed to a hospital setting and that her doctor has privileges and would be able to continue following her care. But we have heard […]
08-13-2012
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 […]
08-08-2012
Bed Is Only For Sleeping Now
We have settled into our new home; room 511 on the 5th floor in the Neuroscience wing. Lily’s heart has remained stable and her arrhythmia seems to be under control with her medications. She continues her therapies throughout the day with Jim and I doing more in between. Lil’s doctor ordered us to “get her […]
08-05-2012
Moving Day
Exactly 4 weeks after our July 9th arrival, today Lily moved from the 6th floor PICU downstairs to the 5th floor in the Neuroscience wing. Her cardiologist and PICU doctors feel that she is stable enough to move out of acute care. A step in the right direction. We were fortunate enough to get Lily […]
08-01-2012
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 […]
