This is our family story or what the daily life of living with burns is like. I want to make sure you all know that each story is unique and the daily life for another child with burns and their family could be much different. There are many things to consider with burns; location on the body, severity of the burn, age of the child, etc. This is just our experience and we are by no means experts. We are simply learning as we go. I am hoping to share a bit of our story to help, support and educate others.
To see the first part of our story please read our first post here.
While in China, I had learned Cleo had very few limitations. She walked, ran, played and explored as a rambunctious two (almost three) year old would. It was obvious, by her gait, that there was weakness in her right leg and right side. She had learned to compensate for it and this did not hold her back. The surgeries she had received throughout the year while we waited to bring her home, gave her the freedom to grow. This is something we are eternally grateful for.
My husband and I visited Cleo’s International doctor the week of arriving home and began the process of exploring doctors and hospitals for her future treatment plan(s). This meant for some long days and quite a few doctor visits, but we felt it was necessary to find the best option for her. A huge provision for us was that we had a few options of highly accredited hospitals that specialize in treating burns within driving distance of our home. In the end, we decided upon Nationwide Children’s Hospital where we were able to keep all of her orthopedic and plastic surgery care within one hospital.
After we settled in, we were able to cooridinate and move forward with a treatment plan for her. We had learned through our orthopedic visits that she had scoliosis (perhaps caused by her side contracture), dysplasia of her right hip and muscle loss in her right leg. Her orthopedic surgeon prepared us that hip surgery was going to be a possibility some time over the next few years, although we were going to do our best to try and avoid that through less evasive options. Our plastic surgery visits revealed that she had some areas of hypertrophic scarring and her newer grafting and donor sites were still healing. There were no immediate skin contracture releases needed, so we could allow for continued healing from the surgeries she had earlier in the year. Both her plastic surgeon and orthopedic surgeon were going to keep an eye on her through visits every three months. Additionally, she was fitted for pressure garments. These help with the scarring and she was to wear them full-time. To further help with the scarring, we were to apply lotion and massage the scarring daily. Finally, she was to visit PT 1-2 times a week. Our first year home was a whole lot about learning, loving, healing, strengthening and observing.
Since arriving home in January 2013, she’s had one contracture release surgery and a skin graft. The contracture release surgery required double leg castings, which left her legs immobile for 5 weeks. This was not the easiest for our little girl who is all about moving about independently! Dressing changes on the donor site were also challenging. However, she (and we) made it through it and after healing and more Physical Therapy. Cleo came out of it better than she went in. She is stronger and faster than ever. From this point on, we continue follow up visits every 6 months for monitoring her hip, leg, skin and scoliosis progress. Growth spurts are when we seem to notice changes, so we keep a diligent eye out for new contractures and gait changes during those times. She also continues Physical Therapy weekly and has lots and lots of playtime with her siblings (the best therapy in my opinion).
iphone photos of a recent trip to NCH to get adjustments noted for new pressure garments
(this usually takes 1-2 visits- one to get fitted and another to get adjustments if they don’t fit correctly)
Other than surgery times, a few extra appointments and pressure garments, daily life is quite typical. She attends pre-school, swims, talks a lot, rides her bike, bosses around her brothers and sister, sings loudly, goes on nature walks to collect little things, talks a lot (did I say that already?), tells me I’m the best Mom in the whole wild west, laughs… you name it, she can do it. The whole bit above seems like a lot (and when we are in the midst of it, it is a lot) but those are chunks of time and then we get right back to the daily grind.
What we have learned throughout all of this is that her scars and orthopedic needs do not define her. Her strong willed personality, her intelligence, her humor, her witty personality, her laughter, her spunk, I could go on… These are the things that make her who she is. We do not hold her back and we don’t hide the scars. In the summer months or during swim times, when her scars become openly visible, people are naturally curious. We get plenty of stares and plenty of questions. We embrace them by letting the questions be asked and answering them the best we can and then we move on (and so do they). This is our normal. We have no idea what the future will bring and we are learning as we go, but one thing we know about our girl… she may be little, but she is mighty and her story remains in the hands of a creator who is so so good.
— guest post by Jessica
This child is amazing. My hero. I am proud to be her Grandmother.
What resources did you use to get information about burn care before you adopted your little one? We are hoping to adopt a child with severe burns and are currently researching.