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 […]
07-23-2012
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 […]
07-21-2012
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 […]
07-20-2012
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 […]
