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 […]
08-22-2012
Adjusting
We are adjusting to Millers West, our new home with Lily . . . for now. We are trying to make her room as homey as possible. It’s very basic and a bit dated, but we have a big window which is nice. We explored outside today to the atrium garden; a peaceful place where […]
08-21-2012
We Need You
If you are up for making the drive please feel free to come visit Lily. We feel so far from home making this part of our journey very difficult. We understand that it can be an adjustment for all of us I just wish my “homesick” feeling would go away. Maybe some new, colorful artwork […]
08-20-2012
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 […]
08-20-2012
Moving Day for Lil
Leslie is riding with the transport team from CHOC with Lily to her new home away from home in Long Beach tonight! Sometime late this evening Lily will become the newest rehab resident at Miller Childrens Hospital. I know this is a BIG day for Les and Jim too, they must feel elated and anxious […]
08-17-2012
V-fib
A big thank you to everyone who sounded with feedback regarding rehabilitation centers the response was overwhelming and very helpful! We visited Miller Hospital in Long Beach yesterday and were very impressed with their program and the head physiatrist. The good news is that Lily has been accepted into their program and we are thrilled […]
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 […]
