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 […]


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 […]


Preparing To Go Home

On Monday we moved out of ICU. Although we moved back to Miller West Rehab facility Lily is technically not in Rehab. Lily remains under a pediatricians care and still closely followed by her cardiologists and GI doctors. Our insurance company is not clearing her to return to Rehab right now. However she is still […]



We are adjusting to Millers West, our new home with Lily . . . for now. We are trying to make her room as homey as possible. It’s very basic and a bit dated, but we have a big window which is nice. We explored outside today to the atrium garden; a peaceful place where […]