MRI Confirmation

Ryan had an MRI last week, and this week I spoke with his neurologist and got the results. I got some information, but needed and still need time to process and discuss and ask more questions. Thomas and I have had limited time to discuss it with each other, with other commitments and Thomas traveling for work, but plan to discuss it more in-depth and have a follow up call with the neurologist soon.

Selfie this morning

The MRI gave the doctors confirmation on what they thought in regards to him having a migrational defect. Ryan has Pachygyria. Although I had not heard that term before, the description is in line with what we have been hearing since his MRI last spring. Forgive me that this may not be 100% accurate and in the real medical terms, but from what I understand at this point, it's a migrational defect and Ryan's nerve cells in his brain did not migrate correctly very early on. This would have happened around weeks 8 - 10 of gestation and is probably genetic. The abnormal migration causes quite a few issues in his brain and it is diffused, meaning that it's not contained to one area, but rather is throughout his brain - front, back, left and right. Pachygyria is without a doubt the reason he had infantile spasms and the underlying cause of his developmental delays. The grooves in his brain are not as deep as they should be, which is similar to licenssephaly, which I have mentioned on the blog before. Pachygyria is a gentler form of licessensephaly. 

Checking out the outside world

Such a sweet boy

The main concerns for Ryan with pachygyria are that seizures problems are predicted for the future throughout his life as well as developmental delays. We are clearly already aware of his development delays and have understood now for quite some time that he will probably always face some level of delay in his development. In regards to seizures, that too, we've been informed may be something that we have to deal with. We haven't seen any seizures since his infantile spasms recurrence from last summer was resolved, and have continued praying that he won't begin having seizures again. I don't know yet what the probability is about the seizures, but I'm desperately hoping that he can somehow avoid them. The seizures really scare me. I need a lot more education about them - what to look for, different types of seizures, what to do if it happens, how dangerous they are, how to prevent them/medical options, etc, etc, etc.

Happy baby!

I didn't get a picture quickly enough, but he
was playing with his feet, which is a GREAT
thing from a developmental perspective.

Right before bedtime tonight

So although we have a term we can put with Ryan's case now, it doesn't really change anything at this point. We will continue with all the therapies and especially continue with all the prayers. I'm currently making a list of questions for the neurologist for our follow up conversation. I'm not one that can think quickly on my feet. I have to take the news and give it some time to process in my mind and then go back for more information. I'll keep you updated as I learn more about pachygyria and about Ryan's future. Thanks for the continued prayers for our sweet baby boy.