Medical Update for Cephas


     We spent last week at Children's Hospital in St. Louis meeting with specialists, running tests and making plans for the best way to help Cephas and Lucia.  We were absolutely blessed by how helpful everyone was in orchestrating the timing of everything and ushering us around to where we needed to be.  Some apppointments overlapped but we got it all in! 

    I pasted this image in that would explain, but not be too graphic. Most children born with spina bifida have surgery shortly after birth, but Cephas still has his myelomeningocele open on his back.  We will head back to the hospital on September 23rd for a brain scan on the 24th, and his surgery to close up his back is scheduled for the 25th.  It will be a 7 hour surgery.  We were told he will need to stay for a week for recovery.

    Before orthopedics can begin addressing anything with his legs and walking they needed to have this treated first.  X-rays that came back of his legs showed several breaks had occurred over time and his knees badly damaged.  One much more so than the other.  It's also very possible that that the knee damage happened over time as gravity worked on his legs when they dangled from the sides of the bed he was sitting in.  Thankfully he doesn't have feeling in his legs. 

   The doctor said this being a complicated case she would bring in a team to discuss but she hasn't ruled out the possibility of surgeries to turn his legs around and flatten his feet so he could be braced.  We are discussing amputating too- just keeping options open and praying for now.  He wants more than anything to be up and moving. 

    Another big praise is that the large prolapse from his rectum has been treated satisfactorily so that no further surgery is needed.  HUGE blessing!  Also, another common problem for people with spina bifida is bladder/kidney function and hydrocephaly.  Cephas tested beautifully on his ultrasounds.  The neurosurgeon is fairly confident the brain scan will show good too (as not having hydrocephaly).


Christie Minich said…
This is wonderful news and sad news.

While Erika's condition is different. (arthrogryposis) she had one leg on backwards which was rotated....but because her feet were so damaged, we opted for amputation. The other procedures had too high of a failure rate. Because of the amputations, she an walk! And she is not in pain.
Praise God that after years of neglect, Cephas is getting the love and attention he deserves! Praying with you!
Samantha said…
Cephas is in great hands at St. Louis Children's Hospital. I love that place. My daughter gets most of her specialty care there and I have been very pleased with the care she has received there. I especially love her neurologist because he is very thorough and he remembers his patients.
Nicole said…
Thank you for the update!! I really enjoy reading your blog...and love your updates on your two newest additions.
-A blog follower in CA

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