Originally Posted on | September 22, 2008

We met with the medical team yesterday. The main reason was for the neurologist to give us the report on John’s MRI.

John has a condition of the brain called polymicrogyria, or PMG. More details further down, but the bottom line is that this is a permanent condition—meaning it will not go away but neither will it degenerate and get worse—that can affect both motor and cognitive development. But “it is difficult to make a predictable prognosis for children with the diagnosis of PMG because each child is very unique in their presentation of this disorder.”

The medical team will be running a 24 hour continuous EEG on John today. He is still having some breathing difficulty, and probably some seizures. They want to see what these look like on the EEG and see if they are related.

John will likely be in the NICU (Neonatal Intensive Care Unit) for 2-3 more weeks. They need to stabilize his breathing, control the seizures, and determine whether he can eat through his mouth—his condition often causes difficultly controlling the muscles around the mouth and throat. When they get all that done, we ought to be able to bring him home!

What to pray for:

• That the EEG will show progress from the initial EEG last week. This EEG will be the one will give us a lot of information about his potential future development.
• That they will be able to control the seizures and stabilize his breathing
• That they will able reduce the Phenobarbital so that John will be less sedated
• That John will develop both sucking and gag reflexes so he can drink from a bottle or nurse

Thank you all for your support and prayers. Our little boy and the entire family are very blessed by all of you.

Here are some more details for those interested:

“Polymicrogyria is a medical term that refers to a particular abnormality in the way that the surface of the brain developed during pregnancy. Normally, the surface of the brain is composed of many different folds. Polymicrogyria means that in at least one region of the brain, there are too many folds and they are smaller than normal. Polymicrogyria can occur focally (i.e., in just one area of the brain) or it can occur in a more generalized way (i.e., all over the brain). In addition, it can occur by itself or it can occur in association with other abnormalities of brain formation.”

John has a specific type of polymicrogyria called bilateral perisylvian polymicrogyria. “Bilateral perisylvian polymicrogyria (also called congenital bilateral perisylvian syndrome) affects the regions around the Sylvian fissures on both sides of the brain. Patients with this form typically have problems with motor control of the mouth, such as speaking or swallowing difficulties. Sometimes mental retardation, cerebral palsy, and seizures can also be present.”

We will get a lot of information over the next few days and weeks about how John’s development will progress. But a lot of his long-term development will depend on how he does over the first couple of years of his life, as first his motor development and then cognitive development give indications of his future progress.

I’ll close with these words by J. C. Ryle:

“I ask whether you pray because prayer is an act of religion to which there is great encouragement. There is everything on God’s part to make prayer easy if people will only attempt it. All things are ready on his side. Every objection is anticipated. Every difficulty is provided for. the crooked places are made straight and the rough places made smooth. There is no excuse left for the prayerless person.”

Kelly and I grateful to all of you who have travelled through the straight and smooth places to offer up prayer for our family and supported us in countless other ways. We remain very hopeful for our little boy’s future, no matter what challenges that may bring. We can already see how much he has been a blessing to us and to many others, and know that God will continue to guide him and us down this path the He has chosen for John and our family.