AhOww...

Because my Mommy-heart was having problems with the doctor's diagnosis of seizures after the (quite experienced) EEG tech told me that she didn't see anything concerning, I decided to seek a second opinion regarding William's seizures. (Not to mention the prodding I got from all your comments... thank you!)

This second Neurologist (Dr. Hippie from the NICU) said that she does NOT think that he is having seizures. She said his EEG was abnormal but that is to be expected with the scarring that is evident in brain based on the MRI. She wants us to take him off the phenobarbital.... hooray!!! The doctor did say that with his type of damage and location of brain scarring, she does expect that he will have partial seizures down the road, age 2-3. We will cross that bridge when and if we get to it.

None of our Neurology appointments, however, are purely good news or really even mediocre news. This one was no exception, unfortunately. I did get to review William's MRI with the doctor while we were there. No super big surprises, I guess. Bilateral diffuse PVL with ventricle enlargement (right side much worse than left). Moderate amounts of brain scarring (left worse than right, ironically). Thinning of the corpus collosum (kind of goes hand in hand with the PVL). And the worst news, cerebral atrophy. The doc says this isn't terrible, necessarily, and that even a term infant's brain isn't fully developed at this stage. She checked William's reflexes and found that his reflexes were not "horrible" and noted that he was tight through his legs but even tighter in the arms. When she put him on his tummy, he held his head high and then promptly rolled over... I was so proud! William did keep his hands fisted the entire visit but this is unusual for him. I think he did it because the doctor was just messing with him so much.

At almost 3 months adjusted, developmentally, William still seems to be doing okay. I wish his head control was better but he is swiping at his toys very well now when he is on his back. I think he will soon grab one! Because his arms are so tight, he has trouble getting his hands in his mouth but, WOW, he wants to do it so much! I think if I can keep him looser like how the Neuro stretched him out, he will finally be able to eat his hands.

But, best of all, William is now cooing. He has one "word" that he loves to use and really likes to "converse" with me. He says "AhOwww" and then I'll say it and then he will repeat with a big smile. He seems to have a great time doing this over and over and over again. I know I enjoy it.

Dr. Hippie told me that she has a "handicapped" child. I had been told this by someone else but would have never dared to ask her about it. I would love to talk to her about her experiences raising her son, finding therapists, dealing with school issues, having a career, etc. But I feel I need to wait before I get too personal with her. Our relationship is likely to be a long one; I've got plenty of time.

There is so much going on in my life right now I would love to blog about but I am having trouble finding time. It is the end of our insurance year June 30 so we are packing in as many appointments as possible. Very time consuming.

Update

I will tell you what the neurologist told us.

The PVL is independent of William's IVH (brain bleed). It is also not a result of his prematurity and that the injury occured sometime in utero around 26 weeks. It is terrible to know that he may have been better off if he had been more premature.

His PVL is not a mild case and he most likely will have cerbral palsy... 95% likely. She noted that a motor reflex of his (sorry, can't remember which one) is already abnormal and indicates that there is motor involvement with his brain injury. She said we need to hope that there is no cogintive involvement.

So that's it, in a nutshell.

It didn't go away

I was hoping that somehow when I went to bed all the bad would go away- that I would have been dreaming this whole time rather than it being my new reality.

Yesterday we got some very, very bad news about William. In the lottery of things that Preemies are at risk for, this is among the top of the list of things I never wanted to hear in the same sentence as his name.

William has periventricular leucomalacia, or PVL. It is a rare brain injury that usually leads to cerebral palsy. I can't believe I had to write that. I am so absolutely terrified for my boy, for my family.

We have yet to speak to a specialist about this and hope that what William has is the milder form of damage. But I am frightened by the way the neonatologist spoke about it yesterday... that it is the most devastating type.

Please pray for my son. Please pray for my family.