Today Daniel had his second MRI of his life. His first one when he was 6 months old, and we found out that his brain didn’t develop “correctly”. He has extra gyria (folds on his brain).
Back then wasn’t a fun time. We just found out he has Infantile Spasms (Epilepsy at its worse). Then we got the MRI and found out that the reasons for the uncontrolled multiple seizures everyday was because of his brain. Mind you dealing with the body blows that ripped your heart out every time Daniel had his clusters of seizures and there was nothing we could do to stop them. All you could do is hold him, wrap your arms around him and tell him that it was almost over. This is not comforting to a little child whose body is jack-knifing, who isn’t able to control his movements.
It sucked. Imagine getting the phone call saying they had the results from his MRI “and its not good”.
I can tell you EXACTLY where I was, what I was wearing, where Daniel was. And I can tell you exactly where I sat on the floor, curled up in a ball and cried. I didn’t know yet what was ahead of us. All I knew is that the doctors assistant called. Can’t remember the whole conversation – just bits of it.
- It’s not good
- Congenital Bilateral Perisylvian Polymicrogyria (I remember asking her to spell it because I knew I wouldn’t remember – it took about 5 minutes cause I couldn’t concentrate on what she was saying)
- He will need help the rest of his life, we will need to look into therapies for him
- He will have difficulties, the region of the brain that was affected is the area that controls speech, generally there is paralysis in the face/throat, they have breathing/feeding problems.
- Very rare, only 60 children in the US. (well we aren’t winning any lotteries here. His Infantile Spasms is considered rare also)
- Do you need me to call your husband?
After the initial shock, I had to call Lonnie at work. That was a hard call in itself. His first baby – his little boy....WTF?? This isn’t how its suppose to go.
Anyways – that was the first MRI – the start of everything.
This MRI can’t be any worse than that right? You’d think not. But we have to wait to get the results.
I know the process still sucked as much as before. This time Daniel had to be put under general anesthesia. When you have seizure history, its can be worse. He still didn’t like it this time around either.
Walking into a room that looks like this – he knows its not going to be a fun time
Before and After photo
I had a thought last night. WHAT IF... when they did the MRI and the doctor called to give us the results that the PMG was gone? Or is was even less than it was before? WHAT IF...they saw improvement? How frickin cool would that be? That if we just continued with therapy for a couple more years that he would catch up? The speech would come, the better control of the body. The walking. His voice, so I could hear him say “mom” or answer me back with “I love you too”
IF that were to happen, you’d probably be able to find me again in a pool on the floor weeping, but for a completely different reason. If there is anything in this world I would ask for, if I could only ask for one thing. Give him his voice. There is so much in there, I can see from his eyes, from his gestures. Just give him a voice, so others can see that he is there too.
Anyhow, now the hard part. Waiting for the results to see if the nerve pathway for his speech has development. IF its not there, he won’t talk.
IF it is there he may talk. But no guarantees. There are so many things with the brain that still aren’t understood. Even if they are there, he may not talk, but we can work on more things during therapies to try to get the connections going.
I tell myself that I am not going to be upset if they aren’t there. We have always been under the impression that the children with CBPP don’t speak. They communicate to some extent and can say a few things that are mostly understood by family members. And we were set in that path and that was just how it was. So I am not holding my breath. If the nerves are there....well then, they are there and I can have a little hope that I will hear
“momma i love you” sometime in the future in Daniel’s voice.
But until then, I will whole heartedly take the open mouthed kisses and the sparkle in his eye, and his little hand on my neck.
For that I am thankful.