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....
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.
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.