Bai will be 16 in less than 48 hours. How can this be?! I feel so incredibly thankful for her, her life, the days we have had, and the future we have yet to experience – good or bad. I never thought I’d get to celebrate, with her, her sweet 16. By God’s graces, the… Read More
It has taken me days to start typing up a summary of what happened with Bai’s CT scans last Wednesday. I always am searching for the right words. The right way to relay the message without hurt, without sadness, and mostly without pity. The girls and I hit the road last Wednesday and made our… Read More
Most everyone who hops on here realizes how much I enjoy drawing. I have many of my pieces featured here, on fb, and for sale in my Etsy Shop, but most of you don’t know how each and every piece I create has a story. Like most I seek inspiration for what to draw next.… Read More
Wednesday the girls and I drove to Indy for Bailynn’s post op appointment at St. Vincent’s and for Lila to get her new mouth spacer put in at Riley. Bai was not happy with the car ride, either direction (I will share more about that below). She was however elated to get to leave the hospital with no… Read More
It has been a long two days since coming home. Though Bai has slept well over night, her days have been filled with tears, screaming and discomfort. Today was a little better, but not by a whole lot. The afternoon brought some happier temperament, then we removed the top bandage cause there is a small… Read More
Surgery will be first thing in the morning tomorrow to repair the spinal fluid leak coming from Bailynn’s back. I will let everyone know how it goes after the procedure. We should be able to come home afterwards, but we are prepared to stay the night if not. She threw in her little bit of… Read More
The plan: We watch the spinal fluid leak over night, if it has not stopped by morning, we have to go to Indy and have a surgery done to repair the tear in the dural. They are on standby waiting for our return. At least it is an outpatient procedure. We have tightly bandaged the… Read More
I dream of sleeping. I dream of laying on the ground hoping for sleep. I dream about how incredibly tired I am and I have not had massive surgery, so what does Bailynn dream about? Does she dream of operating rooms, fear, massive florescent lights and surgical masks? I have to wonder. I have to… Read More
Bob and I successfully removed Bailynn humongous bandage from her back today and with no tears shed! Really, it was from her hairline to her booty crack! Ridiculously huge! She did fabulously! Her back looks amazing. Even with a huge incision down it, it looks awesome. There is no swelling. There are no rods poking… Read More
We have made it to Friday and Bai is still doing fabulous! She ate full meals today, we have weened her off her pain meds gradually today to see how low a dose and how long she can make it – long and low. The incision is still covered with a long bandage that we… Read More
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