Back Home

We finally returned home after 9 days in the hospital. Lily can now get some real sleep so her body can heal. She will remain on antibiotics for the infection and we will continue to find a balance of medicine to control her worsened spasticity without keeping her “snowed” or knocking her out. Life is […]


Day 7 at PICU

Lily remains in the PICU. Since my last post (and us raising the roof) her doctors changed her pain management plan. She has been on Precedex since Thursday and has been comfortable ever since. It has allowed Lily to get lots of rest. She had complications from her surgery; she had excessive bleeding from her […]


Removing Baclofen Pump

Thank you everyone for keeping Lily in your prayers. Her surgery went “without any surprises.” Her surgeon said that after he cleaned up the outer skin he could see the pump had broken through her skin and that he could even read the serial numbers on it. There is no doubt that it had to […]


Emergency Surgery

After a super-fun weekend of celebrations (Sister Charlotte’s 7th and her Grammy’s 70th) the tides changed. Late Sunday the blister on her Baclofen pump ruptured. This was what we feared all along. Since it’s now an open wound and is infected, the doctors said it must come out. She was admitted to Miller Children’s Hospital […]


Keeping the Momentum

Monday was an emotional day. It was a day of raw emotions yet it was also a day of happy ones, too. It’s hard to believe a year has passed since Lily has talked, walked, ate a meal, and just been a typical carefree-kid. We decided to make July 8th not only a day to reflect […]


One Year Later

One year ago today our lives (and many others) were forever changed. It was a typical summer Sunday. The girls were recently out of school and summer was just getting started. Golf camps, surf camps, Vacation Bible School and an annual camping trip to Big Sur were approaching. Not to mention relaxing days at the […]


Milestones and Prayer Request

We are approaching Lily’s 1-year anniversary of her heart attack and brain injury, in fact it’s only 4 days and a few hours away. My sister, Lindsey, has designed a web site (which you are reading this on) for Lily and it will launch on Monday, Lily’s anniversary. There will be additional photos and video so […]


Happy 10th Birthday Lily!

Ten years ago today on May 6th God brought Angel Lily into this world at 11:31 AM on a Tuesday. Lily is linked to chain of miracles from her conception, her birth by emergency c-section, surviving her heart attack to her continued progress in her recovery. This world became a better place when she entered […]


Tribute to YOU!

This post is dedicated to all of you. I have been meaning to do this for several months . . .we want to thank each and every one of you for the soft and fury friends, the handwritten notes of well wishes, the beautiful drawings, the sweet poems, the fine works of art, the tokens […]


Brand New Day

Thank you everyone for your thoughtful posts; I didn’t mean to sound so discouraged in mine. In fact, it’s quite the opposite. Lily continues to progress. She has her ups and downs with various health issues but overall she is doing well. And she is getting better. And she continues to amaze us. But honestly […]