Before I go on with an update about our sweet Daisy, I should pause to acknowledge the overwhelming support I received for my last blog post. Over 3,000 people viewed that post and I received comments and private messages from over 150 people between this page and Facebook. I was so astounded and honored by the way my story was received – thank you, each and every one of you, for reading this blog, for reading my story without judgment and for understanding, accepting and encouraging the person I am becoming. You have made me feel brave and empowered to continue sharing my story with honesty and transparency. I am SO lucky to know the absolute very best people on the planet. I really believe that
Now, onto Miss Daisy.
She continues to fill our life with joy and light. She has an incredibly positive demeanor – she is always smiling ear to ear and she has started giggling. She is working on sitting up – and while she isn’t very successful most of the time, she seems to enjoy toppling over and being propped up again and again.
This past weekend, she was baptized at St. Joseph’s Parish in Cockeysville, Maryland, where the Sullivan family has been worshipping for many years. It was an honor to meet so many people who have prayed for Daisy’s recovery and for our family over the past year and celebrate Daisy being welcomed into the community of God together. Daisy was a star – she didn’t cry or make one peep even during the pouring of the water over her head, she seemed just fascinated by all the new faces and sights and sounds. Our younger brothers, Fred and Michael, are Daisy’s godparents and they did a beautiful job (aside from almost dropping her in a handoff on the altar – they might need a little practice ;). My parents flew in from Boston for the occasion and Nick’s parents hosted a beautiful luncheon afterward - there was so much love and kindness in the room, it was something I won’t soon forget.
We are still working closely with feeding and occupational therapy and Daisy is making some (small) progress in those areas. Daisy had made some progress with bottle and breastfeeding but then regressed quite a bit and seems to show some aversion to feeding orally. We are not giving up, though, and at the suggestion of her pediatrician, we have started to slowly and gently introduce rice cereal mixed with warm water on a spoon. So far Daisy hasn’t figured out what to do with what’s on her tongue so most of the food lands somewhere on her face around her mouth. I suppose this is the first step.
She is able to hold her head up without support from mom and dad now, for the most part. We still need to support her upper body or she will crumple in half but she is able to hold up her head and look from side to side which has become her favorite thing to do. Her head is constantly bopping and rotating -it’s quite funny.
Daisy’s Current Favorite Things
Tasting ice cream on her tongue
Dancing with Dad
Walks in the morning when there is a breeze
Snuggling in Mom and Dad’s bed
Reading Iggy Peck the Architect and Rosie Revere the Engineer
Trying to eat her hands
Having her outfit changed
Being dried off after a bath – this is literally her favorite thing ever, ever, ever. She thinks towels are hysterical.
Looking at her dogs
Poking herself in the eye
Next week, Nick and I are joining several of the NICU nurses, specialists and doctors that cared for Daisy on a panel for medical students at Thomas Jefferson University. We will present how we all worked together to coordinate care and make decisions for Daisy while she was in the NICU and after. We are so excited to be able to share our experience with future doctors, other families and for everyone to see the miracle baby that Daisy is today. She is living proof of the power of prayer and hope but also collaboration between doctors, nurses and families.
That’s about it for now. Every single day with Daisy is better than the last. I find myself crying tears of happiness when her eyes light up or her mouth turns into a smile. I have never felt such joy in my heart and I am so thankful for her presence in our lives.