Decided

I’ve still got a ton to say about education and I promise to continue with all the questions next post, but I just wanted to add a little something.

People who read here regularly know that I’ve been struggling with what to do about Charlie’s epilepsy medication. I suspect that it’s making him dopey and I hate that.

Well, I’ve had a little confirmation recently.

You see, Charlie has FINALLY gained a little weight. He was flat-lined for a long time, but now that he’s discovered the greatness of sandwiches, he’s put on close to a pound. Please don’t misunderstand–the kid eats. And eats. This morning for breakfast he had a bowl of oatmeal, an egg, and a slice of toast. He eats plenty, but he burns a lot too so it’s a struggle to get weight on him and keep it on.

Anyway, with this little bumb in weight, I’ve noticed some personality changes–he’s giggly. He’ll just be hanging out in his room giggling while he plays. I love that. He’s also much more interactive. He catches your eye more often, he smiles in response to things you say, he rolls over to me and tries to pull my hair. He’s still scared to death of the lady at chick-fil-a, but he seems really social to me. I can’t help but wonder if this isn’t his personality breaking through the seizure meds.

We have an appointment for October 7th. I’ve got to be strong (whimper). I’ve got to find an alternative to our current situation. I owe it to the giggly Charlie.

And in case you want to see just what he does that burns so many calories, here he is climbing, which is does many, many times a day.

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Comments

  1. Any chance you can talk to Charlie's neurologist and ask his opinion on trying a different seizure med? Any reason why he was put on Phenobarb to begin with?

    God knows I'm not an expert in the mysteries of seizure disorders but my limited experience with it has taught me that there are many choices of medications to control seizures in children. Finding the right one that will control the seizure activity with the least amount of side effects can take some time. Groginess is definitely an undesirable side effect…especially if Charile has never had an honest to goodness seizure!

    Our first attempt at medicating Kasia was a disaster, and the meds made her seizures worse. On the contrary, the second choice has been a miracle – controlled her seizures with NO side effects other than the incredible beginning of speech.

  2. I smiled when he chewed on his toes..adorable. But when he started giggling at Ernie I laughed out loud :)

  3. What an adorable giggle!!

  4. Katy,
    That is sooo freakin' cute! Come on you can get through to the neuro. I am going to have to have a powow with ours in a few weeks. I am dreading it, too. We are having problems with him not being proactive enough.

  5. I watched and re-watched those videos then showed my husband. I suppose I was struck by the monumental effort that goes into seemingly simple movement. Yet, Charlie's determination is astounding. The way his shoulders, back, and arms flexed and coordinated, he looked like an olympic athlete.

    Damn these bodies that trap our babies and keep us from knowing them completely. But bless their bodies because it's everything we have of them.

  6. Yeah, my husband would be really embarrassed if people thought he posted that last drivel. It's just me again forgetting to change accounts.

  7. oh my goodness, I loved that reaction to Ernie!

  8. Mamá Terapeuta says:

    He is SO adorable!!!!

    I know a a few alternative treatments for epilepsy (specially from natural medicine) if you ever wanna take a look at that road 😉
    They have worked for us.

  9. Charlie's giggle is infectious! Loved seeing his expressions in response to the different characters. And his crawling skills are most impressive!! Love his cute hair! What a sweetie.

  10. ack! the rubber duckie giggle was the best!

    we were lucky that graham came off his seizure meds (phenobarb) before he was a year old. i noticed a HUGE difference in him once he was done with them.

    hope you find something that works so you can keep charlie giggling!

  11. Beyond adorable! He has the best giggle — love it!

    Hmm… that Ses.ame Street dvd sounds quite familiar… it's Adam's favorite DVD! I love it since those were my favorite songs as a kid, too!

  12. Charlie has great taste in Muppets; Ernie was always my favorite, too. Love that giggle.
    Scared of the lady at Chick-fil-A? Mia went into a full blown panic attack anytime anyone outside the immediate family so much as looked at her. Lasted for a year. Good times.

  13. Wow! Charlie looks like he is almost ready to stand! Can't wait to see him when he figures out what to do with his legs.

  14. These are awesome videos! They helped Jeff have a better day. He has crazy upper body strength! Way to go, Charlie.

  15. These videos are awesome!!!

  16. daniel and i are watching the giggle video and whenever Charlie giggles it sends daniel into a fit of laughing. what a hoot!