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May 19-25

This Week

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Today marks one year since Emma was discharged from the hospital. One year of learning, adapting as a family and settling into our new normal. And what a year it has been! Shortly after coming home, Emma was finally able to meet her big sister, Adeline, her pop-pops, aunts, and uncles. She was quickly surrounded by so much love and enjoyed every minute of it.

Children born with scimitar syndrome tend to have many health complications in their lifetime, especially in the early years, so that still is a very real concern of ours. But, by all accounts, Emma is thriving. In the spring, her cardiologist gave us the thumbs up on her progress, which was a relief to hear. We are still diligently working on learning how to eat so that she does not have to rely on being exclusively fed through her G-tube. We made slow and steady progress in the spring but regressed this summer. That has been frustrating for all involved, but we continue to work on developing this skill.
We're happy to share that Emma took her first steps last week and she is saying a few words like uh-oh, ball, and up (we're still working on mama!). She continues to receive weekly speech and physical therapy and is being cared for during the week by wonderful nurses from Bayada. After the past year and a half, I am more certain than ever that there is a special place in heaven for those who dedicate their careers to caring for others the way that nurses do. They have been instrumental in her care and development over the last 11-ish months.

Again, Mark and I want to say a big THANK YOU to everyone who has followed Emma's journey, for praying for us, for sending Emma your love, and for simply just being there for our family when we needed it the most. We look forward to sharing more about her progress with you all!


With gratitude,

Annie

 

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