Mikayla has recently been diagnosed with Hydrocephalus. She had a seizure about 5 weeks ago and when they did the MRI they found that her ventricles were severly enlarged and that she was probably born with this condition. The first doctor we went to suggested we wait 3 months and then measure her head to see if it has grown, possibly doing an Endoscopic Third Ventriculostimy, even though he did not see any blockages. From all the reading I have done, I know that an ETV typically is not done for communicative (non-blockage) Hydrocephalus, so I began to get second opinions. I contacted UVA and Duke University and they both allowed me to send her MRI to them and they reviewed them very quickly. Both doctors talked to me and suggested that we get her shunted and that we do it quickly. I am waiting for one more opinion but at this point it looks like she will have shunt surgery in 9 more days. Left untreated, Hydrocephalus can cause lots of neurological issues (balance issue, developmental delays, schizophrenia), seizures, and up to death.

My intention was not to post to this blog anymore, as Mikayla’s life is now her life and should be private, for her to share her life story with those that she choses. However, in my own research, I have felt blessed by the websites/blogs I have found that people have shared their experiences and picturesof Hydrocephalus, and I wanted to do the same for those that may come after me. Also, this will be a place I can update family and friends quickly as to how Mikayla is doing.

Please keep our family in your prayers.