Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Friday, April 3, 2009

Past email (4/3/09) - Home

Hello to Everyone,

Thank you all so very much for your messages. They do make us feel better. After the diagnosis on Wednesday (which was quite a commotion that I will talk about another day) we met with the Palliative Care team who are the most amazing people that I have ever met. They have answered all of our questions, listened to all of our concerns and relieved us of many of our fears. The fact that we got out of the hospital as quickly as we did is a testament to their dedication. Most of the nurses were stunned how quickly they were able to arrange for us to come home.

The last couple of days have been filled with a parade of people coming to teach us how to take care of Georgia at home and many compassionate nurses, doctors etc coming to say good bye. We even received several phone numbers of nurses willing to provide respite.

I feel it necessary to fill you in with our plan if only to avoid the thousands of questions I may receive over the next while. We have chosen as Georgia's parents to bring her home and to keep her
comfortable and make her feel safe for as long as she is here. We have a team of palliative care nurses and physicians who will come by at least once a day and as often as needed. They are committed to helping us through this. We have been taught how to administer drugs, and feed
Georgia as well as all kinds of other little things now required to care for her. The last email that I wrote entitled Anger is basically inaccurate as to the way that she will leave this place. Choking is
very unlikely according to our palliative care doctor. Eventually the respiratory distress will become greater and greater and we will increase her drugs to keep her comfortable. Essentially what it does is get rid of that panicked feeling and keep her calm. At the end she will most likely be asleep and we will be the ones here to hold her.

Laura, if you want to arrange those meals with the parents from school now I am willing to accept the help. Please remember no nuts or eggs. Darrin if you are willing to come to the house we would appreciate it. Peggy, I am hoping to get Maya into one of the classes starting next week.

We are hoping to keep the next couple of days somewhat quiet in the hopes of seeing how Georgia will fare now that she is at home. Once we are a little more settled visitors will be welcome. At the moment she is settled up in her crib. The crib is now in our room at the foot of
our bed. The ride home from the hospital was great. I think that Georgia knew that she was on her way home because I know that I haven't seen her that calm since before we ended up in hospital. Even the nurse couldn't believe how well she was doing when we arrived.

We will keep you posted with emails and pictures. We have a photographer coming on Monday or Tuesday to capture some of our precious time with Georgia.

Thank you for your continued prayers, love and support,

Kristen

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