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 […]


Settling in at Home

Lily has been home a week and boy does it feel good. We are so thrilled to be together again under one roof, especially little sister Charlotte. Although it can be a bit overwhelming for Lily seems to be happier home–her blood pressure is overall lower than it was at the hospital. In the past […]


Lily is Going Home!

Lily had a CT scan and it shows no appendicitis. Everything is okay and we are cleared to go home today. So happy to finally go home and be together as a family under the same roof. It has been nearly 16 weeks since Lily has been home. We feel ready to go home and […]


Homecoming Delayed

Our discharge that was planned for today is delayed. The past couple days Lily has been very uncomfortable, not sleeping and crying in pain at times. And this pain has brought her spasticity back. 🙁 Now we are trying to figure out what’s wrong. On her last 2 X-rays there has been a “foreign object”/a […]


Counting Down Until We Go Home

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 […]


Baclofen Pump Onboard

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 […]


Resting After Surgery

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


Genetic Test Reveals CPVT

Well, one of the days we have been waiting for finally yesterday. We finally received confirmation from Lily’s genetic testing whether or not her cardiologist’s suspicion’s were right; if she has CPVT (Catecholaminergic polymorphic ventricular tachycardia). Her results were POSITIVE. I’m relieved that we now know for sure but terrified if her little sister Charlotte […]