Our latest trip to the doctor was to the developmental clinic. It was a busy day visiting with OT, PT, and Speech therapists as well as the developmental doctor. It was a hard day as the Dr. gave Grace another "label"... Cerebral Palsy. The hardest part about hearing this is that Cerebral Palsy is NOT a part of Emanuel Syndrome it is something totally separate.
Cerebral Palsy is from a brain injury, which goes back to when Grace was only two weeks old. She had Mandibular Distraction surgery to extend her jaw out because it was so small. During the surgery Grace had to be resuscitated, which led to multiple problems including her kidney failure, seizures, and brain injury. After surgery, the Neurologist told us that they did not know how the brain injury would affect Grace. We were devastated.
We were never really given a clear explanation of why Grace stopped breathing during surgery. There were multiple stories, but to this day, we don’t know the whole story. It was so frustrating knowing that it could have been a mistake on the part of a doctor. I guess mistakes happen, but it should not have happened!
It has always been hard to tell if Grace's developmental delays are from having Emanuel Syndrome, or from her brain injury. I can't help but think what Grace would be like if the surgery complication had not happened. Would she be holding her head up, sitting up...I guess I will never know. It is really hard to just be at peace with it all and to accept what happened!
Our beautiful girl makes it easier, her beautiful smiles are what we need to know that she is happy. Just hard to let go of what could have been...
We were also referred to an orthopedic doctor to look at Grace's spine and hips. He has told us that Grace has scoliosis as well as hip dysplasia. So now we are going to meet with an orthopedic surgeon to see what needs to be done about her hips...another possible surgery :( As for her spine, she may need a back brace, but for the most part they just want to watch it and hope it doesn't get worse!
As for Grace she has had a pretty good winter…saying healthy for the most part. We had one hospital say for RSV, but otherwise way better than last winter! Now that spring is here we are looking forward to spending more time outside and looking forward to summer, when Beau and I are off of work! Oh yeah, and if you know anyone looking for a condo in DeForest, ours is still for sale. We hope to sell soon and move to McFarland where I work. A ranch home would be a dream, that hopefully will come true soon!