Lily’s Journey Six Years Later

It’s been nearly 4 years since I last updated Lily’s site.  It’s hard to count the numbers of hurdles and milestones and put them into a single post. So much has transpired over the last four years. So many changes for Lily and for us. She has grown and blossomed into a beautiful young lady […]


A New Awareness

I’ve been writing this post in my head for months but struggled to sit down and DO IT until now. My therapist encourages me to write, write, write and read later. I think that’s what I need to start doing before another 6 months goes by. Lily has had so many changes; some subtle, some big and some […]


2014 …We’re off and running

So far 2014 has been a busy year. Lily bounced back after having pneumonia over the holidays. She continues to give 200% in her therapies; nearly 18-20 hours a week. We have had some fun in between like playing hooky and going to Disneyland’s California Adventure Park, swimming, to the movies, boating, to school and […]


Happy New Year

Happy New Year! Hope all enjoyed a peaceful and healthy holiday. We enjoyed our Christmas week but unfortunately Lily came down with a pretty serious respiratory illness but thankfully she is much better. We are enjoying our sunny 75 degree weather by spending lots of time outside. Last week, after our harbor walk we stopped […]


Tons of Updates

Season Greetings everyone, hard to believe we are deep in the holiday season and I haven’t posted in over 2 months. Life is moving at a different pace these days. It has been very busy with lots of ups and downs. I’m happy to report that Lily continues to progress every day. She seems to be […]


No Coincidences

Some days our emotions get the best of us and we feel discouraged. Well, the other day Jim and I were feeling just that. We were tired and a little stressed getting Charlotte out the door for school and having to be in Newport Beach (35 minutes away) with Lily for an early weekly appointment. The drive […]


Disneyland, Horses and Football Games

Here are some some pictures of riding at the Shea Center, swimming, going to cousin Nik’s football game (BuenaPark HS) and a HOT afternoon at Disneyland.


Summer Photos

I apologize for the long lapse in my postings. We have been very busy and it’s hard to find a chunk of time to post. Sometimes when I have a free moment I just want to sleep or do nothing at all. But I’m here today to bring you up to date on Lily and […]


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 […]