Friday, June 16, 2006

Guess What Today Is!

Today is my 100th post.

Who woulda thunk it?

6 months and 27 days after starting our journey, we reach a major milestone.

And it's because of all of you that I'm still doing this....

Because it's much more motivating to write, when you have an audience....

...and Commenters!!

So, in honor of my 100th, and in lieu of flowers, cards, or chocolate, I would LOVE to have a quick (or extensive!) comment from each of you.

Whether you're a new or old reader, whether you've commented before or not, whether you're reading this post now or 5 years from now, please let me know that you were here!

And please feel free to hang around for another "Wonderful" 100!

(BTW: I won't stop you from commenting AND sending chocolate!)

***

Seeing how I started this blog because of Michaela, and my first post was about her, I thought it only fitting to post about her for my 100th.

She's doing well. Very well.

The ups and downs of the past are past, and the Felbamate seems to be helping her hold her own far longer than any other medication has in the past few years. They call it the "LGS Miracle Drug", and now I understand why:

It's giving her quality of life.

It's giving US quality of life.

I can actually talk to her like I talk with the other children. No, she's not at an 8-year-old level, but she CAN comprehend. For example, she wanted some ice water, but she hadn't finished what she already had in her cup. So I simply told her, "Uh, you'll have to drink that first and then I'll get you some more." Simple. Plain. No baby talk or repetition. And she finished it, and I got her some more.

Normal.

That's nice.

And even if I only get glimpses of normal, I'll take whatever I can get. She still has a hard time processing information and commands. The part of her brain that has the problem, is the area that is responsible for initiating things. Like "Come here" takes her about 5-10 seconds to figure out. That's OK. We've learned how to give her the space it takes. If we need her to do something immediately, we move her ourselves.

People ask me all the time, "So she doesn't have seizures anymore?".

No, she still has seizures. Michaela has seizures every day of her life. I don't remember the last day she didn't have one seizure. It was years ago. In fact, she has multiple seizures every day.

It's a part of her life. It may never go away. But we're adapting.

She's eating, walking, talking, even getting into trouble. She loves sticker books, coloring, Blue's Clues, and "big Legos". She'd rather drink ice water over juice anyday. She adores her Daddy. She can't be without her Mama. And home is where her heart is.

Overall, I have no complaints. I have 5 incredible children, an awesome husband, an extremely supportive extended family (and church family!), a nice home, and generally anything I need.

I do have a sick child, but she's stable.

And 6+ months post-diagnosis....




.....I still have A Wonderful Life.

20 comments:

Brooke said...

WOW! Congrats on 100. I'm soooooo glad that Michaela is having a better time of it. I very much enjoy getting to be a bigger part of your lives though this window(BLOGGING). I think that my Favorite post was the Sesame Street post. Or the one before that...Or...Anyway you have a nice talent for blogging (among your other many talents). luby!~

Alabamabrands said...

That's funny, 'cuz the reason I started reading was to keep up with Michaela. . .

I'd like to let you know that I hold you personally responsible for the enormous growing list of links to all the bloogers I know. You started this silliness... and I think it's pretty fun.

Mete said...

Happy 100! And I'm so happy to hear that Michaela is doing so well. You all deserve a great summer break!

Denna said...

Congrats on 100 post. I love your blog. It has made me laugh, cry, and smile. You and Heather are the reason I started blogging. I enjoy it.
Denna

Dana said...

I can't believe it! 100 posts! Of course, you know what Michaela means to me and every small step she makes is a very big one for her. Keep blogging and thanks for getting me started. Most of all, thanks for what you and your precious family means to me.

jes said...

precious sister, you have always been an answer to prayer. seriously though. ever since i was a little girl with a big brother whom i adored, i dreamed of a sister-in-law that would not only completely compliment him, love him, cherish him, dream with him, cry with him, support him, need his support.. and most of all (for my prayer) was a woman who could be a friend of mine. and even before he ever took notice of you, you were my friend. God is so awesome! this answer of prayer of mine - you - is more than i could ever have hoped for. a stronger woman than i, a more devout woman than i, a more compassionate woman than i, a woman i pray i can be like whenever i am able to provide her (you) with nieces and/or nephews... i thank you for this blog. it brings the distance between us closer than you think. keep it up big sis! just think... a couple weeks from now, and you and i could be whispering into the nights like old times :o)

baSfsoGp said...

I think that last post "hit the nail on the head" with the comment on "whispering into the nights". I like bloggin' because it's like that--like getting together with a friend and just having time to talk way into the night about whatever comes to your mind to say and having them listen to you and then you listen to them....and you go on way past bedtime. And this blogging spans generations. How else would sixty year old me be "getting together with" nineteen year old (until the 27th) "brooke".

I agree with A.B. "YOU started this silliness." So I am certainly glad you are keeping it up.

J. No said...

Your blog is "over the hill". I enjoy reading your posts because you seem to have a knack for getting the words on the page in a unique way--somewhere between poetry and prose--even when its simply a story about everyday life in the Morris household. Good job, Sistah!

Elizabeth said...

Happy Birthday! I mean - happy 100 blog day! love ya

JeniBeans said...

yeah, you ol' starter of-er!

Kim said...

I'm here! And Michaela is absolutely beautiful!

Happy 100th post! And I'm glad Miss Michaela is doing better!

JSmith5780 said...

As always, I enjoy reading your posts. Not just because we both have a child with epilepsy, but because your posts are always so inciteful...and funny...and real.

Wishing all the best to Michaela. The right drug for her could still be out there. Did I ever ask if surgery was ruled out? A corpus callostomy...MST...resection? There are so many ways to help. BUT, you mentioned the most important part and that is quality of life.
Best to you all,
Jen

Kelly said...

JSmith--resective surgery HAS been ruled out. Her seizures are diffused and bilateral. They would have to take out too much cortex. I suppose MST would fall into this category also, for the same reasons.

The corpus callosotomy has been put on the shelf to be used as a "last ditch" option.

Amanda said...

You had me crying by the end of that one! I'm so glad Michaela is doing so good and I really enjoy keeping up with your blog. Happy 100th... Amanda

Mir said...

WOW! 100 posts in six months?! AND you have time to raise 5 kids?!?!

You really do put the rest of us to shame!

What a great picture of Michaela. She's so gorgeous. :)

Kelly said...

Awwww, wellll, it WAS closer to 7 months....;)

JSmith5780 said...

Kelly- would the MST fall into the same category?? Not sure because no brain matter is actually removed. The idea is to make vertical slices into the brain. Seizures pass thru the brain horizontally, so the slices stop the spread (generalization) of seizures. However, learning and knowledge pass through the brain vertically so that should not be disrupted. The only drawback is there are very few hospitals doing the surgery right now. Just some other things to look into :)
Jen

Your Long Distance Driver said...

I was here.
...
I'm so proud of you! *Sniff*

:)

Kristy Le Date Aujourd'hui said...

Kell - I'm glad Michaela is doing well! And, the cat's out of the bag ... I was tipped off by Elizabeth's comment on MySpace and tracked the congratulations back to your blog ... you have to be the most fertile woman in the universe! Now that it's the 6th, can *this* one be named Kristy??? :-)

kathybumblebee said...

Its great to hear that Michaela is doing well and is so loved. As a research scientist its lovely to be able to hear about the lives of patients who we hope to be able to help albeit well in the future. You write well and I feel touched to be allowed this insite into your lives. Best wishes and many thanks. Bumblebeegirl x