Several updates

Matching boosters.  I had them made in less than an hour, minus the time at Lowes having them cut the wood for me.  I know it's not "nice" but it's no longer a fight to get the boys at the table for meals.  Completely worth turning my kitchen into Thomasville... or should I say, the "Island of Sodor?"

Aidan's seizures are getting yet more frequent, and he is now having many Absence seizures again, along with the Myoclonic.  I met with his neurologist while I was with Damon during the EEG.  He gave me his clinical notes that had not been mailed to me, and also asked that I pick from several choices of medications to have Aidan try.  He seemed very tired and sad, and left.  So I read his notes.  They expressed that Aidan's Epilepsy will not be controllable.  That was hard to read.  Then I went on to his list of medicines.  He'd specifically stated he wanted me to research them before making a decision.  So I looked them all up.  Every one of them were drugs specifically for Lennox-Gastaut Syndrome.  The very Epilepsy you don't want to have.  I'd already been given the hint his was a "progressive" form.  But to have it given, even though gently, in writing from the doctor was very hard.  Aidan is my angel.  Seriously.  To know he will likely suffer so greatly, is so hard to accept, even knowing what I do, it's still so heartbreaking.

Messy messy messy!

When admitting Damon for the extended hospital stay, we also had an appt for Jace with his new neurologist. He agreed with my loathing the sleep medication the old neuro wanted to drug Jace as an attempt to "help" with his lack of sleep.  We've already weened him off now.  Unfortunately, there isn't really another option until he's old enough to wear a cpap mask.  As for other symptoms I was expressing the need for help with, such as Jace's behavioral problems, I was informed that all I'd mentioned were simply "very typical of CP" and that I will just have to deal with it all.  Okiedoky!  I wanted to ask something like, "well is there a class for moms with CP kids???" :)  Trial and error like everything I guess.  (No, he wasn't that blunt, it's just my condensed version of his point.)

*Additional update: So I looked it up. Well now I don't feel like such a terrible parent... behavioral problems really do go along with CP... apparently the brain damage done makes them not only unable to understand, often, but also unable to do what is expected and have a low tolerance for frustration.  Ya, that describes Jace perfectly. BTW I know there are children with CP that are quite nice, patient, and don't complain incessantly or have meltdowns regularly. As I know that there are plenty of kids without CP that do. :)

This was taken before Damon's hospital stay... his hair is a mess, but it shows what a long mohawk he'd acquired before I shaved it off for the EEG.

Damon's episodes appear to not be seizures, but they will not say it isn't on paper, because they still actually could be.  They had "no EEG correlation." The results of the genetic testing won't be available for about a month.  So we will wait for that and then go from there.  Something tells me the test they performed, a CGH microarray, will not have any answers either.

I was very disappointed when they then informed me his neurologist is retiring and wouldn't even give me a follow up with him. I will have to chose from one of their newer, younger neurologists, and to be frank, they are no better than the guy I can't stand here.  Very frustrating.

*Additional update: YEAH! I managed to get all three boys with one of the neurologists I like that isn't retiring yet. :) This will also eliminate some of the extra trips to PCMC.