Our 15 year old, yes I said that, has reached the height of 51 inches and weighs somewhere in the mid 40's in pounds. Muscle wasting from immobile legs mean that her lower half doesn't add much to the weight total.
During the last 4 years, Katia has slowly changed from little girl to young lady. She is becoming more and more responsive all of the time. We are slowly weaning off a seizure med that is pretty sedating and she is achieving greater control of her own swallowing, though not food or drink. She has enough control to keep from choking as much as she used to.
Within the last year, her sounds are changing to include new ones that we can't understand yet. She has tried to lift her arm to move toward her start button on her music machine, many days, multiple times a day.
If I forget to hook her feeding tube to her belly at night, she lets me know within a very few minutes in bed, calling me to check.
And healthy!! She rarely ever even gets a cold or sniffle. No additional oxygen for breathing assistance has been needed in this house for 6 years now. Lots of good food blended in the Vitamix with supplements seem to be keeping her healthy, thank God.
So, after a few years of intensively praying about and considering the pros and cons of surgery for her to be able to sit up after laying for almost 15 years, we searched for the most acclaimed orthopedic surgeon who cared for kiddos with arthrogryposis and the locked up joints that this condition brings. We found one several hours drive north of us who performed his surgeries in the hospital only an hour west of us. After seeing him and a year and a half of planning and prepping, Katia has had bilateral hip surgeries which has allowed her to sit up, 50 degrees right away. It completely unlocked the legs from the pelvis and the joint capsule was kept intact. Her surgical team was wonderful, her surgeon meticulously careful and caring, and she came through like a champ!! 5.5 hours and 2 surgeons, 2 procedures on each of 2 hips, plates and screws which have healed beautifully and Katia tolerated everything so well with no infections or excessive bleeding.
It is so exciting to be able to wheel her into the living room, the center of where everyone is, instead of have her laying on a daybed on wheels that allowed her limited connection with us. There are adjustments to be made and her custom wheelchair that will fit her best won't be ready till probably mid February. We were sent home with a loaner from the company ordering her chair base, and it is a great chair!
This means that very soon she should be able to travel sitting up now! Sitting in her wheelchair is not such a painful thing now that she bends at the hips and we are hoping to be able to get a van and modify it so that she can stay in her wheelchair while riding. That should hold her more securely and will be much easier on us as we won't have to lift her in and out of the van from a lying position each time we stop and put the wheelchair in the back each time we finish at a stop.
This is how I lay and roll
Hanging out with the family
Blessed Christmas to you all,