So the neuro sez

Rocking his 1 sock (we put it on b/c the sight of his bandage was freaking him out)

Finally got the call from the neurologist today (maybe the 3rd email I sent to M's cardiologist this week did the trick - sigh - squeaky wheel and all that.) He was very pleasant and began by saying the neurosurgeon he discussed M with doesn't think he has Chiari - yay- BUT wait!  He, himself, is not convinced and wanted to hear me talk about M. I told him how he can't eat, couldn't tilt his head back for the longest time, complains of headaches, terrible balance with constant falling, delayed, etc etc. We talked about a lot of things - the findings that Macsen has some white matter damage that he said is common in about 50% of children with heart defects, it happens during surgery/bypass and was probably a lot more significant when it happened vs now when a lot has healed. I was so worried when I read the report and it said "damage conducive with injury" thinking did he fall a lot harder than I realized? Should I have brought him in when he face planted off the couch a few months ago? But no - normal for a heart kid (as normal as any of this is.)
He needs to see Macsen - examine him and observe him- in addition to getting another MRI , a special one that watches the spinal fluid and how it circulates, or doesn't, around the brain. He said they can do it at the same time he is to get his cardiac MRI which is great so he doesn't have to be sedated yet again. We just have to get up there! So no official diagnosis yet.
Yet another trip to Philly is now in the works - hopefully for next month.  Of course the week the kids are out of school, the week I have been been mentally labeling "CHOP week" also happens to be the week this amazing neurologist highly recommended by other CHOP heart/neuro families and Macsen's cardio IS GOING OUT OF TOWN! Ugh. Never simple. So now the girls will have to miss school or we'll have to leave them which I hate doing. We still have to schedule everything with his cardiologist so all the dates are really tentative - no idea what their schedule looks like in October. I do know I need to get Macsen seen soon - nothing like the threat of permanent brain damage to make you anxious.
The neuro said no more chiropractor for now(which I get but hate b/c M's retching and gagging is in full force again) and no jumping on trampolines, or bouncy houses. Good to know since I was going to buy Macsen a little trampoline for his 2nd birthday on Sunday :( He loves getting on our big one with his sisters - horrified that I could have done damage to his brain just by letting him play on there. This sucks. I don't want him to have any more complications. I don't want to learn another specialty, another set of abbreviations and painful detail of another major organ I always took for granted. Ok he's got half a heart - don't give him more to deal with please.
Pity party - table of one, just one... bc Macsen won't join me at it. He just keeps moving forward, crinkly"happy eyes" squinting at me, flashing his wicked little grin - reminding me I can't stop believing in him now.