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 […]
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 […]
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 […]
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 […]
Lily came out of her procedure at approximately 4:30 this afternoon. Doctors found that structurally Lily appears to have a normal healthy heart. They weren’t able to pinpoint a particular area of her heart that points to the cause of Lily’s tachycardia which further suggests what her cardiologist initially suspected that Lily most likely suffers […]
As I write this Lily is in the Cath Lab undergoing her heart study. Wires and scopes are run through the femoral arteries. Doctors came out to let us know that the first part of the procedure, the examination of her heart and supporting arteries has been completed and everything looks as it should. The […]
Les and Jim ask that you keep Lily in your heart and in your prayers for her this morning as she undergoes her first heart procedure, a heart study. Wires fed through femoral arteries that lead to her heart will inject dye so they can see what happens to Lily’s heart when it beats irregularly. […]
Today was an active day for Lily, lots of assessments and stimulus for a girl who needs her rest. Due to the flurry of activity her team prefer that Lily and her mom and dad have a weekend of peace and quiet. They hope to be able to have visitors some time soon but everyone […]
A quick entry tonight because so many of you have sent emails to me expressing concern and wishing they could help now. What you can do is send anything you would like to Lily, stuffed animals, cards, comfort items, artwork for her walls. You can drop them off at CHOC Friday or wait till the […]
Today was good day for Lily she had her breathing tube removed and was taken off the medication that was helping her stay asleep. When her nurse removed the sedative she declared that Lily had something to celebrate, one less medication and no more tube to irritate her little throat. Lily is resting comfortably and […]
