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 (3/25/09) - A Good Day

Wow! First of all, allow me to thank you for all of your messages and words of encouragement. Never in my life have I received more emails! Thank you for forwarding my messages on to others. As I have said before you are now my therapists.

Today was a good day. It began with me arriving very early because Mike had stayed most of the night. The ICU is packed at the moment and the nurses run off their feet. We didn't feel comfortable leaving Georgie alone when we know that she often wakes up and becomes agitated. That was the worst part however.

The music therapist came mid- morning with a tiny shaker for Georgia and sang her songs. When Georgia became tired Cecilia just sang her right to sleep. It was so nice to watch. She is coming back tomorrow to

spend more time with her. For those of you that don't know Georgia love music especially singing. I know, I know all kids do. But Georgia truly loves singing. It wasn't that long ago that she was trying to sing along to many of the songs that I sang to her. I don't know a lot of 4-5 month olds that do that. Her favorites are The Wheels of the Bus and Johnny Works With One Hammer. When she is tired she love Twinkle, Twinkle and Land of the Silver Birch.

Shortly thereafter we decided to make another attempt at removing Georgia's breathing mask. We tried yesterday and it was fantastic but heartbreakingly it only lasted 25 minutes. Today, for two and a half glorious hours I held my baby girl and got to look at her whole beautiful face. We sang songs to her for almost an hour and then she drifted in and out of sleep. The doctors and nurses all tried to keep their distance but their smiles were genuine.

Georgia is starting to gain a few warriors at the hospital. Todd for example (a respiratory tech) who during rounds when one of the residents referred to long term breathing assistance reminded the whole team that it doesn't have to necessarily be so. He is also the one leading the charge to get Georgia off the mask. Or Lynda, who is currently working in the NICU but has stopped by the last couple of mornings just to check on Georgia. Or Colleen, who stayed late after a shift hunting down a mobile to help soothe Georgia. Or Alice, who drew a smiley baby face on Georgia's bag or formula in her attempt to keep the room positive. The list goes on and on. Georgia is touching so many lives. We feel so grateful.

On another note, for those of you who old baby stuff lying around and are holding on to it for a possible garage sale consider donating it to your local children's hospital. In the PICU there are only 3 mobiles but 10 beds. Most of the beds are filled with babies. You can also donate any hard plastic toys, pretty much anything that can be washed.

Mike and I are truly blessed to have so much support. We thank all of your ongoing prayers and encouragement. The blood tests will be back on Friday at the earliest. We ask that you continue to pray for Georgia to grow strong and healthy as well as receiving a good prognosis. We feel your energy all of the time. Everytime that I hold Georgia I start talking to her about all of you. Reminding her that so many people are now praying for her and some of them are even planning to come to her birthday party. Her actual birthday is October 6th so her party will probably have to fall on the Thanksgiving long weekend. What an amazing time to be grateful!

Today was a good day. There were no tears driving home from the hospital. The only thing blinding my vision was all of the crazy snow. I am focusing on having an even better day tomorrow. Georgia is leading the way now, and we are all clearing her path.

Love to you all,
Kristen

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