I think it is the time I share a bit about what we have been doing the last few months. I have started this post a few time and the words just have not come to me. I’m not the best typist and never feel like I tell a story the way it should be said with words so I’m just going to type and hope it sounds ok.
Many of you know this and some of you don’t so I’ll start with the condensed story (at least what we know if it) of Cleo’s journey with Burns. When Cleo was a baby she suffered severe burns of her right side, hip, thigh and foot. She was hospitalized for an extended period of time but only for acute care. As a result of the injuries she developed thick scars and multiple contractures. When we accepted her referral her right leg was in a contracted position and her right thigh was attached to her torso. The Lord gave us an amazing sense of peace about this and we accepted her referral with the understanding that she may not ever walk or have limited use of her hip. While we were waiting to bring her home a Chinese Christian Charity took her under their wing and provided foster care and medical care that released the majority of her contractures, freeing her leg and providing a chance for her to grow and develop as she needed. We are forever grateful for this provision provided by the Lord and for the charity that changed our daughters life. On Gotcha Day, when I saw her run, walk, jump, climb I was overcome with a sense of joy that is unexplainable, it still brings tears to my eyes when I think about it. And then I knew after just a few short days with her that this little one was mighty and could do whatever she set her mind to. I have no question that her spirit and might is the very reason she is alive today. We committed on the very day that we accepted her referral that we were going to walk this walk with her… and so we are.
The last few months have been spent attending many doctors appointments. We’ve been getting two opinions on everything and have finally settled in to Nationwide Childrens for her scar and contracture care, orthopedics, OT and PT, and are seeing a local therapist weekly for physical therapy. With the visits we’ve learned that she has scoliosis and that her right hip joint is not fully in the socket, coming out of socket with various motions. Thankfully this does not cause her pain. Both diagnosis we were prepared for because they are easily seen by us. The scoliosis is expected to improve with bracing and somewhat secondary to her hip which is a much larger issue for her. After two opinions (both being the same) the recommendation is that she will require hip surgery to bring her hip joint together as is should be, and preventing further progression and future discomfort. We knew this was likely the course but it is never easy to receive the news that your little one will require major surgery. It is possible that this may happen as early as July. The healing from this is long and requires half body casting and bracing. It will be challenging for sure. In the Longterm- throughout her life as she grows she will have many grafting surgeries, braces and pressure garments to prevent contractures, help with scarring and allow for proper growth. She does have a journey ahead of her and we pray daily for His guidance and that He puts the very best medical providers in her path. We would love if you would join us in prayer too.
With all this being said, her medical is such a small part of her. The appointments take up a lot of time but the daily care at this point is much less than we expected. She is a healthy, incredibly smart, very busy toddler. We all are overcome with love for her. I’ve decided to share because the extra prayer is amazing and I hope it helps educate those considering adopting a child with burns. And perhaps it might even plant a seed that will grow in someone about adopting a child with burns as the SN.
Until this point I haven’t documented much of it, not sure why. But yesterday I decided to capture a bit of our hospital visit with my phone. I was amazed by the creative design throughout the hospital. The wonderland atmosphere, mixed with the nature sounds does take you away from the hospital setting for a bit. By the end of the day (last photo) we were both exhausted and my head was spinning but I was so very grateful that we have such an amazing hospital so close to home.