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3LittleMonkeys
Guest
This is from a Mama on a Spina Bifida list we are on together. She has the following dilemna. Can someone offer her some suggestions?
I do have her permission to post this.
Thank you,
Anne
I do have her permission to post this.
Thank you,
Anne
Hello all,
>
> My Son Phoenix 3mo. has a rare situation, he has myelomenigecele, but also
> had a 67 degree angle curvature of the spine. He had a large opening
> measurig know that it is closed 2.5in by 2.5 in,and at its highest point
> extends 1.5 in off his back. His 1st surgery including a filing down of the
> protruding bone and a beginning closure, his closure was 2 seperate
> surgeries. He is not allowe/ able to beon his back directly because there is
> a large risk of the bone causing skin breakdown. He is currently using a car
> bed and is strapped in side lying. He is 13 lbs and 22 inches, shortly to
> utgrow this option. We are in desperate need of finding a viable solution
> for him being in a normal baby carrier. Physical therapists and Our
> Neurosurgeoun have made recommendations but both caused issues with his back
> or his breathing, he has Chiari as well. So we are back to the drawing
> board, we have yet to find any type of pad that can be cut to fit the car
> seat and have tried an at home creation that was not working. SO if anyone
> on here has a child with a similar condition, please let us know what worked
> for you.
>
> Thank you.
> Megan
>