Friday, January 31, 2014

Ben Update

Ben has been going through a phase lately.  He likes to keep his hat on in the house.  He gets off the bus, comes in and takes his coat, shoes and socks off, runs to the laundry room and puts his socks in the laundry and then runs into the living room and asks to watch "Go-Go" (Cat in the Hat).
I think he got the idea from Abby who, for a couple of days, wore her winter hat around the house all the time.

I thought it was just an at home phenomenon until his preschool teacher started sending me pictures from the classroom :)  She says he "successfully negotiates" keeping his hat on there too.

A week ago Ben set a new record for himself as far as number of seizures in one day.
1 A.M. (just as I was going to bed I hate to admit) I heard him start seizing.  He slept with me the rest of the night and went on to have several more.  By about 9 a.m. he had had 15 total.
He slowed down after that but still had four more throughout the morning/early afternoon.
19 seizures in 12 hours.  15 had been his record until that day.

It was probably Monday evening/Tuesday before we felt like he had his strength, balance and full mental abilities back.  He took several non routine naps those few days.
Every time we see a cluster like this we are worried about regression.  It happens so often with these kids.  So far, we see little set backs such as forgetting or mixing up signs and words but they always come back within a day or two.  Nothing serious.  But we worry that one day it will be serious.

The medical marijuana debate is gaining attention throughout the nation.  I've had several people, including friends, relatives and doctors, bring it up to me.
When I went in for my D&C follow up my O.B. asked me about it.  She said she had read an article where Dr. Sanjay Gupta (a highly respected doctor who used to oppose medical marijuana) said that his hope for 2014 was the legalization of cannabis for medical use.
When Andy and I first heard about this topic a year and a half ago, it was pretty much out of the question in our minds.  However, now, it is a very real option.  We were definitely uninformed at the time and have since learned many hopeful facts.
I want to continue to research and be knowledgable on the topic.  There are so many misconceptions and prejudices about it and I want to be able to be one to educate and support.
I'm sure I will be posting more about this as the issue progresses.


  1. Oh, what a cutie! He looks charming in his hat--and awfully sweet as he snoozes, bless his heart!

  2. Oh wow, what a tough kid (and parents) to deal with that! Sounds like you have lots of things to think about! I admire how open-minded and non-judgmental you are about learning about new things. If you ever need a nap, send Ben on over to play, seriously!

  3. He is so adorable - how could you not just spoil him to death? Lol -one cute little look and hearts are melting!

  4. Those are the sweetest pictures! What a sweet little guy.

  5. Poor little guy, and poor mom! What a tough kiddo. It's never fun to hit those kinds of records :( we've also been thinking about that topic and learning as much as we can. Praying for Ben and you! Hoping for a better week.