Saturday, May 16, 2009

Road trip

Yesterday, Olivia & I packed Annie up in the van and drove to Portland to bring Andy home from school for the summer. But before we got too far down the road, we made a pit stop to see Annie's neurologist for a regularly scheduled check-up. It was nice to surprise him with an alert and happy Annie, and to have Miss Pam--my favorite neuro/mito nurse assist him at our appointment.

He had some good news for us: there's a new seizure med in town, Banzel, that is specifically effective against drop seizures, which is the kind Annie has. So the plan is to wean up on that, and if it shows to be helpful for Annie, we'll begin weaning off of the Zonisimide that she's on, which is cognitively blunting. Eventually, we may be able to also wean her off of the Keppra, and just have the Lamictal/Banzel combo. And, yes, we do run a pharmacy at our house.

So what kind of Annie do you think we'll have if we can get her off of some seizure meds that fog up her thinking? I remember that we put her on the Zonisimide in May of 2007, right when it seemed like she was beginning to talk after the brain injury. Wouldn't that be cool if getting off of it helped her put her thoughts together enough to say, "I love you MOMMY"??? Just wondering...

Anyway--it's good to have Andy back under our roof, and nice to have sunshine out the window this morning. We have lots to be thankful for and now, something more to look forward to.

Jean

It is good to give thanks to the LORD, and to sing praises to Your name, O Most High; To declare Your lovingkindness in the morning, and Your faithfulness every night. Psalm 92:1-2

9 comments:

aunt rebecca said...

Happy Birthday, Peter! I do remember the 'walk around Disney Land' - not that I was there, you understand :-) I just heard about it. In a couple months, you may have a more current understanding of such things ;-)

How is your garden growing, Jean?
I've kilt off four tomato plants so far, and found a great website on the garden value of weeds. Yep. I'll tell you about it later.

Hi to Andy and all the rest of the Sullivan clan!
love,

Susan said...

Banzel sounds very promising! Praying for its success with Annie. Rebecca, I want the website about weeds!

Jean said...

Yes, Disneyland...I remember it well...it was a beautiful Southern California day in May, and I was trying to walk myself into labor. By the time we got through Tomorrowland, I gave up and went home.

Thanks Sue, for your prayers--and let's hear about those weeds, Rebecca.

Teena said...

Jean-
Ben is on Banzel (rufinimide) and today is 19 days seizure free, a record for Ben. We started weaning other meds last week. We were told about 50% of kids with intractable seizures improved greatly. Plus, so far no horrible side effects. Ben is nice and "tuned in". Best of luck, and as always, we're praying!

aunt rebecca said...

Here you go:

http://journeytoforever.org/farm_library/
weeds/WeedsToC.html#contents

You'll have to copy the URL into your browser. This is a BOOK...if you don't like reading a lot of pages on your computer screen, you can print each chapter -

For all you gardeners, it is fascinating reading!

Jean said...

Thanks, Rebecca--I'll look it up. :)

Teena--I am so happy to hear about Ben--and very excited to see what Banzel does for Annie!

Anonymous said...

Such a simple phrase can mean SO much! I'll be praying for a simple "I love you Mommy."

Tanya W

Gretchen said...

Easy prayer request. "I love you, Mommy!".

Meanwhile, I'm thrilled that the road trip went well and that Andy is home. We missed our Annie fix on Friday.

xxxooogjh

Sue Powell said...

Sounds so promising! Praying for success.