Wow, I got behind!

I haven't updated in a while! We've had a lot going on. I mentioned that Charlie started having seizures again....well, they got really out of control again. We have diastat but I didn't want to have to use it so I took her in before it got to that. They did and EEG and the results....they aren't seizures! Um, ok? So these things that make my child jerk and tremble for over an hour are NOT seizures? Oh, but they are neurological. But not seizures. Quite frankly, I don't get it, but whatever. I just want them to stop. They said increase the Ativan. Ok. Increase the Topamax. Ok. Start Clonidine to help her sleep. Ok. She just got worse and worse and we had to use the diastat 5 times in two weeks. And that was being very cautious. It says to use it after 5 minutes. We were waiting an HOUR before using it. And the diastat helps.

So we had a neuro appointment and he was upset we used the diastat so much. WHAT ELSE COULD WE DO!? They won't help us! I told him I am NOT ok just ignoring this. I don't care WHAT you call them, she is miserable. She is in pain. She can't sleep. And I personally don't believe they aren't messing up her brain. Her autonomic stuff is all out of whack right now. And she's screaming for no apparent reason. *Something* isn't right.

So he told us to try clonazepam, AKA Valium. We just started it last night so I don't know how much it will help yet. If it doesn't help, I don't know what we can do. Hopefully palliative care can convince people that Charlie's COMFORT is just as important as her health.

After they admitted her. Even when she's miserable, she still manages to crack a smile or 2.

During the EEG. Other than the frantic screaming from...something...she did for over an hour the night the hooked her up, she did wonderfully.


Her oxygen requirements have decreased, thanks to the baclofen relaxing her airway. We found out the hard way though, that we still can't take her off the oxygen. Even if she appears stable off of it, she dips fast and struggles for a long time to get back up, even on 3L. So when she's doing very well we still keep her on .5L. but this is a rare pic with no oxygen.

And easter stuff! I made Charlie a butterfly with crinkly wings and jingly antennae. She LOVES it!


Isn't he cute in an ugly sort of way?

Charlie's basket had a hat that was turned upside down and fit over the bottom of it. Kind of a cute idea. It fits Adrian well....

But it's huge on Charlie! She thought it was funny that it covered her face. LOL

Adrian and "Goater". I guess he's a goat. He looks more like a sheep. Adrian is saying "Baaaaa!" (That's what sheep say right? Do goats say that too? How sad that I don't know...)

Adrian and his giant banana. If you look closely, he's holding it next to his face, not away from him, so you can see how big it is. He can't even fit his hand around it! Neither of us noticed the mutant bananas when he tossed them in the cart. When we got home I showed him how massive it was and his eyes got really big and he said, "Mama! I have to eat that RIGHT NOW!" He only got like a 1/3 of the way through it. He's been struggling lately with eating (loooong story that goes back to his infancy) and apparently the key to getting him to eat is to offer him abnormally large produce.


And just a cute pic. :-)