Violet

2021 EMBRACING BRAVE North Texas Recipient

Violet is a 6 1/2-year-old super happy, sweet little girl. She is 100% tube fed and cannot walk or talk. She has Cerebral Palsy and has global developmental delays. She brings so much joy to our lives, and anyone who is around her. Her smile lights up the room!

She was born about 5 weeks early weighing 5 lbs., 3 oz. She spent 5 weeks in the NICU, during that time she had surgery at about a week old to get a g-tube button placed. After being discharged from the NICU she began casting for her bilateral club feet. Apart from the tube feeding, the first few months of her life didn’t differ much from her siblings when they were babies.

That began to change around 4 months of age as she began falling behind on milestones. Around 1.5 years of age she was diagnosed with Cerebral Palsy. The doctors eventually prescribed a helmet for her flat head, and AFOs after the casting was done for her feet. She also received glasses and needed to patch her eyes since they would get lazy and go cross eyed. The patching worked well and thankfully she no longer suffers from some of those afflictions. Violet still needs corrective lenses but currently doesn't wear them for any length of time, as due to her development, she prefers to chew/lick them rather than wear them. She really only interacts with things within her range of sight which is closer to her. Around 4 years of age she had 2 additional surgeries to further correct her feet and legs, reshaping and repositioning various bones in her feet, and lengthening the tendons in the back of her legs in an attempt to enable her to fully extend her legs. Unfortunately, the tendon lengthening had only limited success. However, the surgery performed on her feet was much more impactful!

Violet has been going to weekly physical therapy for her legs and overall body strengthening. As well as getting PT, OT and speech therapies at school (during the school year). It has been amazing for her and she gets stronger every day. Unfortunately, due to the recent pandemic she was unable to go to physical therapy outside of school for nearly 9 months and had lost some of her forward progress even regressing in some areas. We have since been able to resume her therapy, and she has almost recovered to pre-lockdown ability and is again making good forward progress. She will be having surgery on her legs later this summer or early fall to hopefully allow her to fully extend her legs!

Violet remains undiagnosed aside from the CP, but they believe it to be a genetic disorder of some sort. We have done many tests over the years to try and figure it out as well as seeing genetic specialist. Violet is the strongest, sweetest girl and we all learn so much from her. - 2021