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 […]
08-04-2012
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 […]
08-02-2012
Lemonade For Lily
Jim and I would like to thank Tammie and everyone who helped with yesterdays “Lemonade for Lily” stand. We heard it was quite a success! We continued to be touched by everyone’s kindness and support for our sweet Lily (and for us and Charlotte). We saw some pictures and you all did such an amazing […]
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 […]
07-31-2012
Lemonade for Lily
I received this email from a dear friend, Tammie Flanagan, this morning: “We are doing a lemonade stand tomorrow (Wednesday) for Lily…it was my son, Parker’s idea. Is there any way you could maybe let people know? We are doing it on the sidewalk in Talega… Starting around 2pm” Thank you Tammie and to all […]
07-28-2012
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 […]
07-24-2012
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 […]
