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 […]


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 […]


Staying Put For Now

It doesn’t look like we are heading home tomorrow. Whew! Even if we were to be discharged we would fight it because we don’t have any equipment, medications, a hospital bed or anything set up at home. It’s all in the works but nothing is at the house. We have stuff to pack up, furniture […]


Change of Plans

We just found out that we may be going home Friday or maybe as early as tomorrow. We knew we were on our way out next week, but tomorrow..??? I honestly don’t know how that is going to work. We have NOTHING at home for Lily’s care. I know they are feverishly working on getting […]


Back to Rehab … We Think

Lily passed the g-tube plastic disk yesterday….whew! Glad we can check that off the list. Lily seemed to be more comfortable afterwards and had a restful day yesterday. She started off having a peaceful day today but she still is having some kind of discomfort. It’s anyone’s guess as to what is bothering her . […]


A Guessing Game

Lily had her GI procedure yesterday afternoon as scheduled. But wouldn’t you know it that when the GI doctor went down to fetch the plastic disk in her stomach it was no longer there! So her stomach must have squeezed it into her intestines and it’s hopefully on it’s way out. Why can’t Lily catch […]