A sound, some steps and disturbing news from his neuro

It's been a crazy week already! Running all over the place the last few days.

In therapy yesterday he did CME again but it was at 9am in the morning. Also after having the whole last week off due to his cold. With enough distractions, via books and songs, he didn't fight it until the end. And I "tricked" him into take a bunch of steps. Probably at least 3 or 4 times stepping 2-5 steps a time. It was always at the end of the exercise. He would be stepping towards me and I'd slide back a bit to cause him to step more. It was awesome to experience!

Another fun moment was had on Sunday just before dinner. He was super hungry. We'd put him in his chair before I really had the dinner cooled for him so Mike offered a banana, one of his favorite foods. While I was handing it to Mike and we both were saying, would you like a banana, he said NA! Loud and clear! Mike and I almost jumped on top of him in excitement! There was nothing added, nor did it come back, but at least it was there for a moment. We relished in that moment for sure!

Today in speech he was super focused, as he has also been with me lately, on his therapist's face while she was working with him. It's as if he's studying our faces to really learn what his mouth must do to make a sound. Really fabulous to share with him. He's also continuing to be really communicative with his "yes" head shaking and his "more" sign as well as "all done" sign. So nice to at least have some more clear back and forth.

And lastly, today before speech (but after school) we finally saw Dr. Mitchell, his Neurologist. She is always surprised/happy to see how well he's doing. She and I were reviewing the MRI and the things she pointed out were a little disturbing. I recorded our conversation so was able to listen again, to make sure I heard correctly, and share it with Mike. She said the recent MRI looks very similar to the last one, which is good and consistent with the two neurosurgeons who have looked. But she pointed out the "chunk of his brain that is missing" due to the bleed he had. I'd never been alerted to that before so it felt a bit odd to hear. And she said the ventricles are large. Because of the chunk missing, I guess causing the fluid not to be absorbed, hence the shunt.

The brain stem connection to the spinal column is small but it doesn't mean anything except for as a reminder that it was compressed at one point. The cerebellar tonsils are lowered but not extreme. But when she got down to the lumbar MRI, she pointed out that his spinal column is enlarged 2x the size it should be. She wasn't certain why or what this means. She said we don't need to do anything unless he shows symtoms. But honestly, how is a non-verbal 2.5 y.o. going to tell me if he has symtoms?

I looked it up and it turns out the enlarged column is related to Chiari Malformation. As is the lowered cerebellar tonsils. I didn't walk out of the meeting confidant that she is the one we should be meeting with. While I believe she knows her stuff, she admitted to never seeing and M-cm patient. She's seen PMG patients but M-cm has a whole other set of issues to look out for. So I will now be searching for the one to see and will send his MRI to that person.

Dr. Dobyn's in Seattle is the genetics/researcher guy to check with. He was the original doc who diagnosed him, after looking at his MRI and over the phone after asking me a couple of questions. I had actually called his office this morning to set up a time to bring Ian up to see him in April, after cold/flu season has mellowed. And I will call his research assistant tomorrow to ask who he'd suggest we see for neuro. We will also see Dr. Graham by the end of the year. He's genetics at Cedars and is one of the co-authors on the paper that was recently released on M-cm.

I also posted these questions to the M-cm FB group. What a wealth of knowledge that group is. Amazing night time reading! So many little things in common, these kids have. And things I would have never thought to pay attention to pointed out. Thank goodness for Facebook!