Grateful

We are so very fortunate to live where we do. Over the past two years we have discovered incredible supports and services available to help Taylor. Supports and services that are completely funded. Words cannot even describe how grateful we are for the things we have access to. Things that we had no idea were out there until we needed them.

Now we can add another to the list. Rotary/Flames House called us a couple weeks ago to arrange an meeting with Francis and I. Our neurologist's nurse put in a referral for us some time ago and once they reviewed Taylor's file we were accepted.

Rotary/Flames House is a hospice for children located right next door to the Alberta Children’s Hospital. Calgary is the first city in Alberta and only the sixth in North America to have a free-standing, community-based facility to support families of children facing progressive, chronic or life-limiting illness.

We had our meeting there yesterday morning and are so blown away by the house. It is very beautiful, inviting, and homey. Nothing hospital-ish about it. They are providing us with respite care on a planned or urgent basis for up to 30 nights per year. Care is provided 24 hours a day, by a team of trained healthcare professionals, to allow families time for rest and renewal. They ask the family to stay with the child during the first planned visit in order to help them get to know the child and their routines.

They have two family suites and 5 other bedrooms for children and youth. Family members my choose to stay with their child at any time to provide extra support and familiarity. Stays may be anywhere from 1-14 consecutive nights. When we stay there with her all our meals are provided, they have a chef that prepares the meals and a large kitchen and dining room where everyone eats together. They have an amazing multi-sensory room which provides tactile, visual and auditory stimulation.

The living room has a fireplace and a unique wall with a large table for gatherings and some shelves for games. The library has a large variety of books for both adults and children. The Flames room is a place for play and entertainment. it has Wii, Xbox and Playstation game systems, a large TV, air hockey and football. The rumpus room houses many toys for all ages as well as computers for homework or games, a stage for shows and a piano. The den is a room with more games and a TV, as well as a high speed computer for gaming. It is geared to older children/youth and families. Upstairs are the bedrooms, a beautiful sun room with a variety of chairs and two walls of windows, a lounge in front of the nursing station with many chairs and a big screen TV, and a tub room with a special hydrotherapy tub and wheelchair accessible shower. Outside is the lighthouse which is a heated patio with constellations on the ceilings made of lights.

It's just an amazing place. I am so looking forward to the four of us spending a weekend there as a family to get a feel for how it all runs and the care that Taylor will receive when she stays there on her own.

So very fortunate and so very grateful that we have this.

Not so grateful for Taylor's tube. That damn tube. The tape and duoderm holding the tube in place on her face was peeling off. Shar offered to help me replace it before she left but I said I'd get Francis to help me when he got home. Later in the afternoon I grabbed the camera to steal a picture of her 'cause her hair was so crazy funny she looked like Kramer. I turned around to put the camera down on the kitchen island and suddenly she was screaming her lungs out. She pulled the tube out. Mother of god. Shoulda taken Shar up on her offer. This is the third tube change in less than a week. Unhappy me. Unhappy Taylor.

On a happier note, it's Friday night! Pizza night. Marissa was her usual crazy self. Baths are supposed to be calming aren't they? Well she finishes her bath and starts bouncing off the walls. She's not much of a dancer. Loves going to dance class. But rarely will show us what she learns. Well tonight, she was watching Playhouse Disney before she went to bed and suddenly started rockin out. Bustin a groove. It was a riot. Got a few shots of the dancing queen!