Day 16: #TeamEverly Update — Colby got to hold Everly for the first time today. It was epic. We’re still doing tons of research. And we finally thought of a way you can help!
Here’s a video of Colby holding Everly for the first time today. Colby didn’t get to hold her closely, but this was a great and exciting first start. Everly slides down her bed as she wiggles since she’s on an incline, so Colby moved Everly to higher ground.
In the past when Everly needed to be moved, two nurses would interlock hands and carefully move her, but Colby was ready to jump in. Everly handled the move like a champ and I heard Lion King in the background.
The medical team’s primary goal is still making sure they don’t harm Everly. Colby and I are still processing a lot and consulting with doctors, friends and the OI community. We’re taking our time and making sure we understand as much as possible.
Throughout Everly’s journey, people have asked us how they can help.
People have come forward to support Everly and us. Everly has numerous prayer blankets. She has new clothes and hair bows from friends. And people continue to shower us with prayers, helpful information, gift cards, cooked meals, and other creative acts of love. For instance, our neighbor decided to loan us their step stool so Colby could go in a better kiss. Everly gets her short stature from her beautiful mother.
If you’ve felt helpless in knowing how to help, know our family is more than covered. We have medical bills, but there is no fear that we won’t be able to take care of them. We both have great jobs, no debt and there is gas in the tank. We don’t need donations. But if you struggle for wanting to help in some way, please consider making a donation to the OI community on behalf of Everly.
Our friends in the OI community give and give so much, but there is so much to be done in order to give our kids an increasingly better shot in the future.
Everly is far from the only OI kid needing some love. She has friends and we’ve met many of them.
Plus, I’m a little emotionally exhausted from such a deep post yesterday. Keeping the focus on our amazing OI community gives me the excuse I need to not overshare tonight. Everly is stable and looking well. She’s getting lots of love from family. More on Everly’s journey to come.
If you aren’t comfortable giving to one of these groups, please support them by sharing this post so more people learn about their important work.
Here are two organizations and a family that Colby and I already support finically. Please consider donating $25 to one of these groups in honor of Everly L. Baker. For numerous reasons, people are drawn to Everly’s story and we’d love for her to be a spark that breathes life into the wider OI community.
Donate $25 to the OI Foundation in honor of Everly: http://nate.at/donate2theoif — The OI Foundation funds important OI research and helps spread awareness about OI. We printed out the OI Foundation’s nursing guide and it currently sits by Everly’s NICU bed. I thought it might be polarizing to tell a nurse how our baby needs to be handled, but many nurses have told us they’ve read the guide and that it is very useful. We also have been in touch with an OI board member and they have been incredible helpful.
Donate $25 to the Center For Courageous Kids in honor of Everly: http://nate.at/donate2cck (Be sure to designate the donation for osteogenesis imperfecta.) — The Center For Courageous Kids is a camp in Kentucky that accepts seriously ill children who would not be considered for other programs. Many of our fellow OI families go each year. Colby and I are excited to stay involved in some way. Here’s a video about what we are about: http://youtu.be/kEU_1zHru_g
Donate $25 to the Schlegel Family Mourning Fund in honor of Everly: http://nate.at/donate2schlegelfam — Michelle and Eldon Schlegel were married 21 years before Eldon suddenly passed away. Eldon is survived by many children, 3 of which have OI. Eldon was the Schlegel family’s only source of income and they have a massive stack of medical bills on top of their regular bills. Please consider helping this family financially as they adjust to a new normal. Family friend Jodi Aldis Hora set this fund up.
Thank you Lord that you continue to give us precious and triumphant moments with Everly. Even though there are times when we break down and ugly cry and wonder where in the heck You are, after we snap out of it, we start to realize all the places where you are taking care of us and Everly.
Today’s lesson: Everly has the cutest friends and they need your help too.
Please pray that:
- God heals Everly.
- God will bring us all closer to Him.
- Colby and I will clearly see the next steps we need to take.
- Our family will be able to be fully present when loving Everly.
- Facebook doesn’t take this post down because it includes copyrighted music.
Much love from Team Everly