I’ve been traveling back and forth between Dallas and Colorado: I’ve had the chance to receive a lot of updates about family and friends from my parents, and it reminded me that we need to provide an update as well.
In short, our family entered a period of transition in late May. For context, my career is spent in corporate development which involves determining how companies grow which involves buying and selling other companies. In May my current employer announced it was being sold to another company. While I was involved with coordinating the sale, I have decided to not go with the acquiring company. We have instead made it our goal to try to make a transition home to Colorado. So we have spent the recent past focused on trying to get home and closer to family.
We are motivated to be at home due to the past three years and more for future developments in our family dynamic. Claire’s recovery continues to change and additional hurdles have been presented. First, Claire has developed spinal scoliosis. Claire is a growing girl. Her skeletal structure continues to expand, yet the muscles to support her bones remain untested and weak. Tools like the stander focus on bones density. The stander is also a great tool because it’s a passive instrument: we can place Claire in the stander for a prolonged period of time and monitor her comfort level while gravity does the work. Working muscle strength and endurance requires active attention (despite such late-night infomercial promises from electrical stimulation ab belts). Horse, occupational, oral and physical therapy all focus on stimulating muscle tone; however, there is a limit on the time Claire can sustain. And at the end of the day, Claire’s bones have grown faster and her muscles can’t keep up.
The result has been a case of scoliosis. Some of Claire’s vertebrae have pivoted causing her left rib cage to distend. She will have to have some vertebrae fused to correct. We will start monitoring her pulmonary function to make sure her breathing isn’t labored. We will not proceed with the surgery unless complications or health risks associated with the scoliosis arise. Since she is sill growing, we’d like to avoid a surgery like spinal fusion as long as possible.
We also learned of additional orthopedic issues. Claire has been more spastic on her right side than her left. This has contributed to some problems with her right hip joint. The socket at the hip which holds the top of her femur has become loose and the opportunity for her right femur to become disjointed has presented itself. She is not in pain; however, this has limited her ability to bear weight. The solution is another surgery where the doctor will remove a piece of bone from the femur to build up the hip socket, keeping the bone from slipping out. Like the scoliosis surgery, we are waiting and doing what we can to stabilize the joint. This includes a medieval looking brace for her legs and hips. Claire doesn’t like it. We don’t either.
Other than this disconcerting news, Claire is doing well. She took a break from horse therapy through the summer and returned a couple weeks ago when temperatures were more moderate. We’ve seen improved strength from the therapy and Claire has impressed us with her head control of recent. We’re all proud of her and never tire of her smiles.
Autumn and Heidi have been in school for a little over a month now. Autumn is playing another season of soccer while Heidi is preparing for her first eligible participation in the Nutcracker ballet. They continue to pamper their little sister and make her feel included.
On the whole we’re doing well as a family. Transition periods always take their toll; nevertheless, we remain positive and vigilant for a move back home to Colorado.
Our Claire Journal 