🩷 Eleanor Update 🩷 First, I just want to say thank you. Thank you for the prayers, the messages, the comments, the kind words, and for carrying our family through the last few days. I have read so many messages from people encouraging us, praying for us, and checking on Eleanor. We feel every bit of that love, and I don’t have the words to tell you how much it means. Yesterday was one of the hardest days I’ve had as Eleanor’s mom. When they took her back to place the halo I was praying things I never once thought I would be praying for because of Eleanor’s Osteogenesis Imperfecta, one of our biggest fears was whether her fragile skull would tolerate the halo placement safely. By the grace of God, she made it through. The halo was placed successfully, and for that we are incredibly grateful. We are praising God for that victory. I know this picture may be difficult to look at. Trust me when I say it was difficult for me to see too. Yesterday I probably cried for five hours. Seeing your child in a halo, attached to traction, sedated, and on a ventilator is something no parent is ever prepared for. Today, though, I am in a much better headspace. I’ve had time to process what I’m seeing and remind myself that while the halo looks scary, it is helping her. This is not something being done to her, it is part of what is being done for her. For those asking what happens now, Eleanor currently has 3 pounds of traction on her halo. The weight is helping gradually improve the alignment of her neck before surgery. Twice a day, the team is taking X-rays to closely monitor her cervical spine and determine how her body is responding. At this point, we still do not have a surgery date. The team is truly taking things day by day and watching her imaging very closely. Surgery could still be later this week or tomorrow but right now the focus is on safely progressing her traction and making decisions based on what they see. Many people have asked about the halo. While we don’t know exactly what her timeline will look like, the halo will likely be a significant part of Eleanor’s recovery moving forward. It looks intimidating, and I know it may even make some people uncomfortable to see. It certainly did for me. But this is part of her journey now, and part of the road that will hopefully lead to a safer, more stable spine. The positive news is that Eleanor has been doing well. She remains sedated and on a ventilator, but on very low settings. A few times she has started to wake up enough to move her hands and try to cry, which has been reassuring to see. The team is keeping her comfortable and adjusts her medications as needed. We did have one small bump in the road today. One of her IVs infiltrated and some bicarbonate leaked into her hand, causing swelling. The team caught it quickly and is treating it, and they’re watching it closely. Most of today has been quiet. I’ve spent a lot of time sitting beside her bed, holding her hand, singing to her, and reminding her how loved she is. Another blessing is that Stewart was able to stay an extra day with us. Having him here after everything yesterday meant more than I can explain. He’ll head back home tomorrow, but I am so thankful for every extra minute we got together. Please continue praying for Eleanor. Pray for wisdom for her surgeons. Pray for good X-rays and positive progress with traction. Pray for a safe surgery when the time comes. Pray for healing, comfort, and protection over our sweet girl. And most of all, thank you for being here with us. Thank you for loving Eleanor. Thank you for believing in her. Thank you for helping me carry this when it feels too heavy to carry. One day at a time. 🩷 If you feel led here is her gofundme. But are so grateful for all the love, prayers and encouragement. https://gofund.me/b4f3f3df0 #osteogenesisimperfecta - @tashajohnson_