Change in Diagnosis & Surgery Prep

So the sweet peas diagnosis has been changed. They are now saying that it's Colpocephaly with Aquaductal Stenosis instead of Hydrocephalus. Because of the Aquaductal Stenosis a shunt is still required as opposed to a drain to just get out the excess fluid. So she will still have this lifetime commitment to this implanted device. :(

Colpocephaly is basically (as I understand it) where the white matter in the back of the brain either fails to form or forms more slowly than usual. This allows open space that allows the ventricles to dilate more in the back than the front. The prognosis is very different from that of hydrocephalus in that we are looking more at seizure and neurological disorders than mental or motor retardation. Because she is young there is a good chance that the white matter can still grow in once the excess fluid is gone or it won't. It's another wait and see deal. This is basically an untreatable condition, where symptoms are attempted to be managed. She may need a lot of physical therapy off and on as this condition can cause her muscles to tighten and shorten. It all depends on how her brain grows and responds after the excess fluid is gone.

There is still a possibility of brain damage like with the hydrocephalus because the fluid did and is pushing out her brain against her skull and causing pressure. Another wait and see.

We have spent everyday with her since she was born on Friday and I honestly don't see where she is lacking anywhere in her cognitive abilities or motor skills. I of course am not a Dr or expert in anyway. But I am greatly hopeful after seeing what she can do.

Her surgery is scheduled for 0830 this morning and she is already all prepped up. Her Daddy and I are just hanging out with her and hopefully getting to cuddle with her while we wait for the Drs. and anesthesiologist to talk with us and get us to sign various consent forms.