20' Post Tube Surgery!!

What a champ!

A few good days

These past few days have been wonderful! Such lows, such highs. We even went camping! Ben and Chloe both slept in a tent for the first time. Side by side, surrounded by Aaron and I. They were so cute. Ben has been doing really well, it seems like he has turned a corner - although I hate to call it that because it's not linear. He's been a very happy little baby. He laughs (to himself, often, which is adorable) and interacts with us all. He pulls Chloe's hair - which she doesn't mind! She gets excited when he reaches out to grab anything, including her hair. Now, really, what 3 year old does that? She is amazing. She celebrates every triumph of his. She also tries to entertain him. Here, she set up a chair so that he could watch her show off her moves on the trampoline.

More seizures

The seizures have returned. Ben has had 3 seizures in the last 4 days. It is such a bummer. I try to be grateful for everything that we do have - smiles (lots of them!), eye contact, movement, sounds, ability to eat. It could always be worse. Can you believe, though, that after almost a year of this, I still find myself getting hit full force with the reality of his life? Some days it feels like a punch in the stomach.

Another seizure today

Oh boy. Now I am worried. Another seizure within a week. This one was longer than the one last Sunday. I wish I weren't so worried. I wish I could handle it better. I just don't want Ben to have to live with Epilepsy. Life is hard enough. Can you imagine adding unpredictable seizures to the mix? He won't be able to take a bath alone. He won't be able to learn how to ski. He won't ever get to play High School Sports, be on the Rowing Team, swim, get a driver's license. I remember being a gate agent at the airport when someone in the wait area had a seizure. He convulsed on the floor, and then woke up surrounded by strangers who had just witnessed his seizure. I can't even imagine what it would be like to have that happen to you. I'm sorry this post is so depressing. I've tried very hard to only focus on the positive, especially in these blog posts. Today I'm just not feeling very positive. I worry for Ben. I worry for Chloe. I even worry for Aaron.

Ben after his acupuncture treatment

One seizure in almost three weeks!

Ben had a seizure on Sunday - after 17 seizure-free days. It was a quick seizure, not at all as devastating as they had been. So that's great news. This time is critical - if they continue to abate, it is really, really good news. But, as Dr. Sullivan says, 3 weeks is just too early to tell. We just keep hoping for more and more seizure-free days.

It's hard to know what is working for Ben. Is it the acupuncture? Is it the medications? Is it growth? At one point - which seems like an eon ago - Dr. Sullivan did say that there was a chance that he would outgrow the seizures. He said it was a small chance, and that they could come back at any point in his life, but it is still a chance.

Developmentally, Ben is progressing wonderfully. This is a huge lesson in patience for me (I don't know if y'all know this about me but I've always said, "Patience is a virtue - just not one of mine"). People who haven't seen Ben in a while can really see the progression. He is pushing up on his hands more, reaching out for toys (VERY exciting), pivoting in circles on the floor (an important precursor to crawling) and sitting better. He still falls over from a sitting position, but his therapists believe that is because we are always there to catch him. So the prescription is - don't catch him, and then make him do a situp to get back to sitting. Hopefully that will discourage him from relying on us. No one likes situps!!