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Thank you all for sharing in the lives of our three amazing children- Mairead, Jack, and Ben. We hope you visit often!


Wednesday, July 14, 2010

MRI results

I finally heard back from the neurologist. I was literally 10 minutes from calling a patient advocate. Anyway, here is the deal. The good news is that there is nothing seriously wrong. No malformations, no tumors, no lesions, cysts, etc. That is hugely helpful. He said that he can see the damage done by the clot, but that it is not serious damage and it is the only damage. All good.

The fact remains, however, that there is damage, and as we all know, her brain does not work the way most kids' brains do. He said that it is certainly reasonable to assume that her delays are a direct result of the stroke, but that there is nothing in the brain to actually SEE that would give us any concrete explanation.

He also noted 'incomplete myelination.' She is very young, so that is to be expected to some degree, but it is something he wants to watch. Of course, I googled everything after I talked to him and one analogy for disrupted myelination is that if the brain is the internet, brains with complete myelination operate on DSL, but incomplete myelination can be like dial-up. The information is all there, but it doesn't connect as quickly as it should. This makes perfect sense to me, actually, because I feel like that is how M's brain operates. It's in there.... it just doesn't connect the way it should.

He wants to set up a blood and urine collection (fun times) to run a complete biochemical panel to look for and/or rule out anything genetic, metabolic, hormonal, etc. He also wants us to follow up with a neuropsychologist- mostly in the hopes that s/he might be able to help us on the educational side of things. If a stroke is not a disability (which it is not, according to the schools), she may end up with a diagnosis of PDD-NOS or something, just so she has a diagnosis the schools will accept.... we'll see.

I was talking to him about how the schools don't see a stroke as a disability and that she operates on just about a 12 mos delay, and he was actually laughing at the ridiculousness of what I was saying. He is incredulous that they won't qualify her for a preschool program. I was actually glad about this since he, a neurologist, validated everything I think.

He wants to continue to follow her "for some time." No idea what that means. He agrees with her original neurologist that she is a complicated case and there is no clear cut answer to how she will progress. Neo-natal stroke is under-researched and the outcomes vary to a huge extent. Not super helpful to me, but that's how it is.

I am relieved that nothing is seriously wrong. I am relieved that he agrees that we can reasonably surely trace her problems to the stroke and not to a whole new problem. I am glad he is going to follow her, and I am actually glad that he can see brain damage because I KNOW her brain doesn't work right, so I am glad to know that my instincts are right.

I am not super excited about the biochemical panel because I will stress about her having some crazy disease I haven't even thought of. I am anxious about the neuropsychologist because I fear an ASD diagnosis when I truly believe that is not the case. The only good thing about an ASD diagnosis is that the schools would HAVE to help her.

I guess that's it for now... thanks, everyone, for all of your support. On to the next steps...
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Tuesday, July 13, 2010

Monkeys and Bubbles

We have been having a lot of fun this summer and enjoying a ton of family activities. Tonight, for example, we took the kids out for ice cream and for a drive before bedtime. Just little things like that- we try to fit in simple things between all of our appointments, therapies, etc.

Mairead has been singing a lot lately, and one of her new favorites is "No More Monkeys." She can sing it all by herself- you have to turn up the volume to really hear her, especially since she is eating chocolate pudding while singing.

She loves music. Last night, we were in the car and she told me, "Find music on the radio. In the backseat." She is making a lot of progress lately and comes up with new phrases all the time. We are so proud of her!

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The boys had a special treat today in that Mairead took an early nap before speech therapy, so Jack and Ben had Mom AND Daddy to themselves. It was super hot out, so we found some fun with bubbles inside. Ben (in blue) loved them the most!

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Thanks for checking in with us. Stay cool!