We met with Emmett’s neurologist in Saint John yesterday. And wouldn’t you know, he hadn’t received the MRI results and had no idea there was any issue. HUGE SIGH. I really, really should have called his office to check in to see if he had received the results. I just figured 5 weeks would have been plenty of time. Everything is transferred electronically for frig sake. He didn’t seem very impressed that he hadn’t received anything yet, either. He had one of his nurses call the IWK to see if they could send it asap but, of course, no one answered their phones. No one ever answers the phones at the IWK. For us, anyway. ANOTHER HUGE SIGH.
Before we met with the neuro Emmett had a 20ish minute EEG. He is so good when he needs EEGs. Most kids scream and freak out and need sedation. Emmett just hangs out while the leads are put on his head. He usually tries to roll around but with Ryan and I on either side of him we keep him still. All we have to do is show him his light wand and he’s as good as gold.
We then brought the neuro up to speed with everything and I went through my giant list of questions. We sat in his office talking about everything for an hour. Emmett’s EEG was basically the same as the last few. Not better, not worse. Still a lot of epileptic activity. We asked if Emmett would be a candidate for brain surgery and he doesn’t seem to think so. Emmett didn’t have an actual seizure during the EEG, he only saw all the “in between” activity, and he said sometimes it came from the right side and sometimes the left. But, in about a month, we’re going to go to Saint John for a 24 hour EEG to see if his seizures all start on the same side or not. If they do, then he’s a candidate. When he said he didn’t think he would be a candidate for the surgery my heart sank. But at the same time I felt relieved, it was very strange. I wanted to cry and be upset but at the same time say THANK GOD WE’LL NEVER HAVE TO PUT HIM THROUGH THAT! We’ll see what happens when he has the 24 hour EEG. He did say that if one side showed a big chunk of the seizures and a few came from the other side, it might still be possible, but we should seek a second opinion. Maybe a trip to Toronto or someplace in the states, who knows.
When it came time to discuss the scar tissue that showed up on the MRI, I asked him if the seizures caused it. He basically flat out said no. And that it was likely something that happened during development, and as the brain is much more mature now, we can finally see it on an MRI. This was the first time that he’s actually given us a straight answer and answered quickly. Usually he kind of takes a while to answer and carefully chooses his words and they’ll always include either “We can’t know for sure” or a “Maybe” or “It’s hard to say”… so for him to come right out and say no, and that it was something that happened during development, it really took me off guard. And of course sent me back into that mindset of, “Is this my fault? What did I do?”
It was hard hearing that it was probably something that happened during development. I had my share of moments over the last two years wondering if it was something I did that caused all of this. I know these things happen and you can’t do anything about it, but it happened to us. I was the one who carried him for 41 weeks. It’s hard not to want to blame yourself. As far as I know, I did everything “right”. But again, we really don’t know for certain and will never know what exactly happened. And it doesn’t matter. We can’t go back and change anything.
Onward and upward.
We also got a prescription for his carnitine deficiency. And I must say, I’m really happy we have good insurance coverage because if we didn’t we’d be shelling out $150 a month for this supplement. I won’t be able to give it to him until the dietician works it into his diet and makes adjustments to all of his recipes. I’m sure it will contain some carb, hopefully not too much so it doesn’t interfere with his vegetable and fruit amounts.
He also agreed that the scar tissue is what’s to blame for his developmental delays, visual impairment and seizures. Exactly WHY the scar tissue is there, we still don’t know. But at least we’re finally getting some answers.
I cannot believe our little dude is going to be 2 years old next month. It honestly doesn’t even feel like one year has gone by, let alone two. Birthday planning is underway and his party will most likely consist of just immediate family. He gets pretty overwhelmed with a lot of chatter in once place so hopefully all goes well.
Tomorrow Emmett has a very special playdate! I’ll leave it at that and make another update soon. 🙂