Trick or Treat

TREAT
Ben remains seizure free and he continues to improve a little each day. Last week, I took him to therapy and felt confident enough to leave him there & run an errand. It was an amazing moment b/c I've been taking him to therapy at Emerge since he was 9 mos old. And in all that time, I have never been able to leave him there. I wait in the waiting room even though he's in therapy for an hour and a half. Last week I was desperate for a cup of coffee and I needed a birthday present. There is a book store right next door. So I thought I should be strong and make a run for it. I was nervous the whole time I was gone b/c even though I trust the staff @ Emerge completely, I took the diastat with me. So if he did have a seizure, he'd be stuck until I got back to him. The entire time I was gone (20-25 mins) I kept waiting for a phone call.
But, all went well. No seizure, I got some shopping done and a cafe latte to celebrate. It was a small step. Commonplace for most moms but a huge event for me.


TRICK
Ben's mood has also gotten better since his calories have increased. However he's still very emotional. We can't get him to sleep alone at night. He fights us going to bed and once he's asleep, if he's sleeping alone, he wakes up crying about 4am and we can't get him back to bed. So, he's been sleeping with one of us every night for the past 3 weeks. He's also having a hard time transitioning between activities & locations. And he cries any time anyone leaves. His teachers say that he does this at school when anyone leaves the classroom. Even though the Drs @ John's Hopkins don't think it's depakote withdrawal, I do think it's somehow related. It all started once we stopped the med. It's almost as if Ben is feeling very insecure and now that he's so alert, he's a little overwhelmed by life.

TREAT
We emailed the JHH Drs & gave them an update since we've been home. The dietitian
increased his calories again & he's now up to a total of 1075 per day. We also expect to get the go ahead to stop his final seizure med.

TRICK
Ben is so skinny it's amazing. He got too tall for his 3T pants so I bought him some new pants. All 4T. They fit in the length but are way too big (when he walks they fall down). Luckily my friend Dina can sew and will be able to add draw strings.

TREAT
My friends are so awesome. A bunch of them came over on a Sunday and cooked up a ton of Ben's favorite Keto foods. It was a great afternoon spent cooking & catching up. And I now have a freezer jammed with Keto food. It's made my life so much easier.
If I'm running late in the morning or rushing home with the kids for lunch and need to change to go to work, I just grab something out of the freezer. A major help and convenient (which is not normally something you have on the diet).

TRICK or TREAT
Ted & I took Ben & Grace trick or treating tonight. We debated going (we weren't sure how Ben would handle it)but decided at the last minute to give it a try. Ben was dressed as a king, Grace was a hobo (not an indication of my opinion of them, I bought the King & hobo costumes last year on clearance and they were the cutest ones left). They both looked adorable. Ben really didn't care about the candy. He just had a good time getting pushed around in the stroller and looking at all the sights. He's doing much better walking but in the dark, I think he would've struggled. And even though his stamina has improved, he still fatigues faster than his peers b/c of the low calories & we did a lot of walking up & down hills.
Grace on the other hand figured it out immediately and was all about the candy! She marched up to each door and pushed her way to the head of the line. Even though she was the littlest. On the sly, Ted and I were pulling the candy out of her bucket and giving it to the other kids. She caught on though. She realized that each time she went to the door, she'd get candy but that somehow, in between houses, her candy would disappear. She refused to give us her bucket after awhile and was trying desperately to eat the candy as fast as she could. Wrapper & all!

Happy Halloween to everyone.
I hope that all the ghosts and goblins who come to your door tonight are the 4 ft tall and living & breathing kind!