Wednesday, April 9, 2014

Ben Lately...

Well, lately, things have been...different.
For the last 2 or 3 months he has been on a pretty consistent schedule of two weeks with no (big) seizures and then a cluster (up to 20 in 8 hours) and then two more weeks of nothing...etc, etc.
Our neuro. okayed us to try using Ben's emergency meds to stop a cluster instead of stopping a long seizure.  3 or 4 times I gave him Diastat after the 3rd seizure in a cluster.  It did wonders.  It wiped him out for several hours but then he wouldn't seize the rest of the day.
However, shortly after we started doing this, his pattern started changing.  We're wondering if giving him the Diastat caused the change (It's so hard to know!).  He was having them more frequently.  Not as big of clusters but more often.
Then, over spring break, he got sick and he was having several seizures practically every day for about a week.
He's feeling better now but he has not recovered well from the episode.  He's usually tired and wobbly and a big confused for about a day after a big cluster but this time it is lasting for several days.
Andy looked over at me last night after observing Ben staring off and sitting still and quiet in his chair and said, "Are we losing him?"  Besides SUDEP (sudden, unexpected death in epilepsy) regression is our worst fear.
I can't imagine losing our full of life, comical, and happy Ben to a Ben that doesn't move much and doesn't make an effort to communicate often....a Ben that needs to wear his helmet again.
We're praying that things turn around soon.

The other night while I was holding Ben after a seizure, we were talking as a family about Ben's meds and how they don't help him much.  Matt, very sincerely, and slowly said, "We're lucky to have him."
If you know Matt, this is even more meaningful because he is most often laughing and full of energy and rambunctious.  To see him so contemplative and understanding was sweet :)

Chillin' in his "Dee Do" teepee.

On a happier note, HB105 passed here in Utah which means that as of July 1st 2014 it will be legal to posses a specific kind of cannabis oil (medical marijuana), with a neurologist's signature, to help treat intractable epilepsy.
I'm not sure yet what obtaining it will entail or how soon we will be able to have it for Ben, but we are on a waiting list @ Realm of Caring in Colorado.
I'm just amazed and thrilled that it passed so quickly here in Utah and appreciate all the moms that represented the rest of us at the legislature and worked so hard for our kids.  Well done ladies!!!

Okay, I couldn't decide whether or not I should post this last thing...
Both Ben's bus driver and his bus aide that he has had since the beginning of the year, had to leave their jobs before the end of the school for a pregnancy and one for multiple surgeries.  They have both been so extremely sweet to Ben.  They love him and we love them!

Isn't she cute?!
 I wanted to give them a parting gift and so I decided to make a card for each of them with my silhouette.  I found the perfect image in the online store, cut it out and then sat and thought about what wording I would use.
I wanted to do a play on words and this is the first one that came to mind...
(I did have an exclamation point at the end but it kind of got messed up so I cut it off.  It probably would have helped a little bit :)
Do you get it or is it too much of a stretch?
When you see it, I hope it makes sense (You're the Best!) but when someone hears it without seeing how it's spelled it might sound kind of funny :)
I realized this after I said it a few times but decided to go for it anyway since they would have the spelling right in front of them.  
Anyway, I loved the bus fun :)


  1. I LOVE the bus and the saying!! Ben is so sweet! I'll be praying. You're an amazing strong woman!

    Blessings and hugs!

  2. The card is cute and creative! I'm sure Ben's aides will love it. Ben is such a sweet kid. We will keep you guys in our prayers.

  3. What a cute bus, and I'm sure they will get it - and appreciate your thoughtfulness. So sorry that things with Ben are changing. That is such an adorable picture of him in the teepee and I love his little feet sticking out! Adorable! Hugs to you!

  4. I totally got the bus! Ben will certainly be in our prayers, as will the rest of your sweet family.

  5. I can't imagine what you are going through with Ben and to have to have those kind of serious talks with the other kiddos. My prayers are with y'all!
    And your bus cards are cute! I totally got it!

  6. I finally got around to catching up on my blog reading... so sorry to read about Ben. It's so hard when things change and what little constant we have is upset. We will continue to pray for Ben and your family. I'm so happy to hear that you are on the waiting list for cannabis!! I wondered when I heard that is passed there if you would be able to get it quickly. I'll be anxious to hear what it does for Ben when he is able to take it!!

  7. I don't know how some of your posts slip past me. This never showed up in my reading list.
    How hard to even have to contemplate Andy's question! I am so glad he came back fully and we pray daily for his continued health. I love the story about Matt! So precious!