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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Lily is doing very well thanks to her new Baclofen pump. She seems very comfortable with very minimal spasticity. We are happy we made the tough to decision to have it implanted. We are still anticipating heading home by Tuesday. But as always we are just going with the flow because things can change at […]
Lily remains in the PICU today. She is recovering and doing well. She is being kept comfortable with moriphine but hopefully that wont even be necessary by tomorrow. And now that she has the Baclofen pump her doctor has already eliminated her other spasticity medication and is weaning another one. And boy what a difference […]
Thank you all for your prayers and well wishes for Lily and her Baclofen pump surgery this morning. Everything went as expected with no hiccups. She is still asleep from the surgery and is resting peacefully in Millers pediatric ICU. We will keep you posted on her recovery. God Bless, Leslie
